CHD Awareness month: That’s all folks.

I went to a funeral this weekend.

It was the mother of one of mine and Craig’s close friends.  The church was packed…over 740 people attended.

It was such a testimony to the woman that she was….family, friends, colleagues….all surrounded her to celebrate her life.

I became very emotional during all of it.

Not just in sympathy for my friends….but in fear and anger.

Death is different to me now.  I’m surrounded by it daily.  But, the death I witness is not of people who have lived long lives…have a spouse, children, and grandchildren to leave behind.

The death I’m witness to is one of children.  Babies.  The most innocent leaving this world.

I ached as I listened to our friend talk about watching his mother struggle during her last days.  I listened intently as he talked about the scene that will he witnessed that “he’ll never forget.”

The thought of him losing his mother is heartbreaking….the only comfort I could muster up in this dark time for him was that room full of people.  The long life she lived…the lives she changed….the fullness of her life surrounding her that day.

I had to leave early because my boy needed me.  No one other than Craig and I know how to care for him…so during the waking hours…it’s either Daddy or Mommy duty.

I drove off…and I suddenly felt anger and fear.

Anger because I know there have been many in the Heartland that have had to plan a funeral for their child.  Have had to find the words, the music, the right this’s and that’s to accurately portray the beautiful life their little one had.

And that’s not fair.

Fear because I’m scared that I may outlive my son….a harsh reality of the Heartland.

And that’s not fair.

What does it all mean?  This whole month?  This whole month I’ve been shoving stories on your computer screens about babies with heart defects, women who are trying to change the face of congenital heart disease.  

My hope was to not alienate you.  My hope is to motivate, encourage, stir something up in your heart….to educate others about CHD, to share stories of hope about CHD, to find a cure for CHD.

My anger and fear for the lives of the children dying from CHD have no purpose but to give my heart an outlet to cry out.  It doesn’t change anything.  Doesn’t make anything better.

Hear this…something good must come out of the tragedies in this world.

Whether it’s congenital heart disease, child hood cancer, rare diseases….any disease….something good must result from it.

We can’t allow the fear, the anger, the tears, the helplessness we all feel to be it.

It can’t end at the next medication, the next surgery, the next intervention.  These things are all grand…they give our children time….

But, I don’t want “time.”  I don’t want a few years with Evan.  I want a lifetime with him.

I want to witness from the Heaven’s his celebration of life….where he’s surrounded by his wife, his children, his grandchildren, a church full of lives he touched and changed….from his long, full life.

The Heartland is rallying now to educate hospitals, birthing centers, midwives on the use of pulse oximetry to screen newborns who were not prenatally diagnosed.

We are witnessing how new drugs are helping our little ones hearts beat more efficiently…although we cringe as we give each one.

We are sharing stories of the latest innovations in surgical techniques to hopefully allow our children to use their ‘broken’ hearts for many years before a transplant may be needed.

We are creating our own walks, our own fundraisers to raise money for research…because not enough is being given to our cause.

We. The Heartland.  And now..hopefully after this month…you.

Us.  All of us…trying to give our children the greatest of hopes…

A cure.

It must end at that.

A cure.

That’s all folks.