Every once in awhile it hits me yet again...out of nowhere. Strange how that can happen. One moment you are layering a fabulous lasanga, the next you are feeling the tears well up in your eyes, because your child just put on his own coat, or tried to tie his own shoe...or...well don't get me started. How often I think to myself...he shouldn't be here, and I just quicky reprimand myself for thinking such a thought. Why shouldn't he be here?
Because we almost lost him twice.
Lost him...I cannot even comprehend that.
Monday was one of those days...
All was well, Braeden was taking a bath filled to the hilt with foamy white bubbles, and in the very next instant...bam...tears.
Why was I crying? Because his toenails were blue. No they weren't really any bluer than normal, but it hit me right then, for some weird reason...he isn't better.
We will always face the fears, we will always wonder... he isn't fixed...he will always have this heart defect. I think that it hits me especially hard after the death of another heart child. Evan passed away this week, he was seven years old.
I read somewhere that we cannot cope, if we have no hope. I digress...
You may find me crying over pancakes one day, or a sappy Hallmark commercial or even over a bubble filled tub.(over blue toes)but I hope you will never find me saying that I have lost all hope. Please keep Evan's family in your prayers...we are getting ready to leave for his visitation, and I cannot imagine what his family must be going through.
No matter what happens...
Our lives hold surprises...
One thing remains constant...
The sun always rises...
When trials surround us...
When things are just fine...
One thing is certain...
The stars will still shine...
Today...we received the most troubling news...
The doctors told us...we must choose...
A chance at life... all we can give...
Our hope...our prayer...let our child live.
You see...they told us something's wrong...
The heart within you...is not strong...
What will we have to put you through?
Oh Lord...I don't know what to do.
And the stars will still shine...
By the light of the moon...
And if God be willing...
We'll be holding you soon.
Today...we welcomed you at last...
As time...just seemed to move so fast...
Before we knew it...here you were...
I still cannot stand what you'll have to endure.
I held you close...and stroked your hair...
Wishing...that...life were more fair.
No matter what happens...somehow we will cope...
I'll give you a chance...I'll hold onto hope...
And the stars will still shine...
In the midst of our pain...
And the sun shines it's brightest...
Only after the rain.
Today...we'll have to let you go...
I thought...I was prepared...
Today...I'll let you leave my arms...
Your heart must be repaired.
And God must be right in this room...
(To prevent me from falling apart)
And I can only pray...Dear Lord...
Please let them fix...his heart.
And the stars will still shine...
When the storm grows anew...
You hold our son's life...
And our trust is in you.
Today...an example...of God's loving grace...
We're on our way home...we're leaving this place!
This hospital room...was our home for awhile...
It has seen every tear...it has held every smile.
Homeward bound...Lord can we do this?
One day at a time...I know we'll get through this.
And the stars will still shine...
And we've prayed for this day...
And we see peaks of sun...
Through the clouds dark and gray.
Today...some friends... so very dear...
Have had to face...our greatest fear...
They lost their child...how can this be?
My hearts breaks for...this family.
I still see his face... as I whisper his name...
And then it sinks in...things will not be the same.
And as we watch our child thrive...
We wonder why their child...didn't survive.
And the stars will still shine...
Through the anguish and pain...
And the light that they left here...
Will always remain.
No matter what happens...
(What can we expect?)
Of life with a child
With a heart defect?
And "defect" doesn't...
Seem quite right...
I prefer...precious...
In HIS sight.
And the stars will still shine...
And perhaps one will fall...
Your that one shooting star...
That surprises us all.
~Stephanie Husted
4 comments:
I can totally relate to the crying...I'm actually glad that I'm not alone! It doesn't take much to bring the tears, and often times they come at totally random times. I almost always tear up when Derrick starts laughing...It completely overwhelms and amazes me when he laughs.
I wish someday the fears would be able to go away. I'm sad to know they don't after the Fontan. I've been looking forward to being "finished" with surgery...or I tell myself that, because I know that reality is, you never know. There is never any comfort in everything being "ok" or "repaired" and that kinda stinks. But you know, this whole heart experience has been amazing, and I really wouldn't trade it for the world. I'm so glad that hearing D laugh brings me to tears, because he's laughing, and because I've really learned to love the little things.
Beautiful poem, and praying for Evan's family...and your little guy too!
Big heart hugs and prayers,
Shannon
www.carolinacarters.blogspot.com
I cry all the time and worry about everything. I was hoping the worry and crying would subside when she has her Glenn...but from what you write, it will be here forever. I am praying for Evan and his family. As always...your poem touched my heart and soul.
We all have those days as heart parents Stephanie. Everything seems to be a trigger...blue toes, smiley faces, sweet giggles, kisses and hugs. They remind us of how far we've come, where we've been, the struggles we've and the MANY reasons we are thankful to still have them with us.
Keep smiling Stephanie!
I just learned of Evan's passing from his dad this morning. So sad.
Stef, Ryan, Wyatt and Logan
http://www.whenlifehandsyouabrokenheart.blogspot.com
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