Why We Talk About the Death of our Child. . .

Today is February 1st, which means we are going into a month surrounded by everything “Heart.”

Valentine’s Day is upon us and along with the pink and red, we bring awareness to other things heart such as Women’s Heart Health, heart attack prevention, signs and symptoms of a failing heart.  We see the celebrities and political pleas to learn more about the heart as a woman.

But this month, I’d like to bring awareness to CHD’s, or Congenital Heart Defects which is actually something very close to my own heart.  

A Congenital Heart Defect is an abnormally formed and functioning heart.  Many CHD’s are now detected prior to birth through routine sonograms, however, many are not detected allowing babies to go home with life threatening defects.

In 1997, our son William was born with Hypoplastic Left Heart Syndrome (HLHS) which went undiagnosed until it was too late.  As a result, William suffocated and died.  If only his echocardiogram was performed, we would have had options.  

We have learned so much about HLHS over the past twenty years, but not enough to prevent it or in many cases successfully treat it.  Raising awareness means getting a dialog going about demanding prenatal fetal echocardiograms and neonatal echocardiograms as routine testing prior to any discharge from the hospital.  Early detection means a greater chance of success in treating and beating CHD’s.

We know this first hand as our youngest son, Nathan received an echocardiogram prior to having stomach surgery at one month old.  His testing revealed a heart defect known as Fenestrated Atrial Septal Defect, which is basically multiple small holes in the heart.  He is doing great right now and is just 2 weeks away from his next echocardiogram to see how he is progressing.

After the death of William, each of our children received routine echo’s to rule out any CHD’s.  Unfortunately, many babies are still being sent home with dangerous and life threatening CHD’s.

We talk about our son’s death not to scare parents, but to make you aware that CHD’s are more common than you think and prevention can save lives.  Please take our experience and tragedy as an opportunity to start a dialog about bringing testing to light and making sure that each parent makes it their own priority to insist on these tests prior to leaving the hospital with that beautiful brand new baby.

Let’s keep February a heart month by having a heart for those living with, fighting and overcoming Congenital Heart Defects!

 

 

riding the wave to, “it IS WELL”

It’s here.

 Today is William’s birthday.  Today he would have been 18 years old.  18 years!  A milestone.

The would, should and could have’s are great this year.

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It has been a particularly difficult year for us dealing with the ups and downs of adoption, the heart ache of family illness and tragedy of much loss.  This year, I have struggled in the waves the Lord has set me upon as He refines me, loves me and rescues me over and over and over again.

I have my Peter moments when I am all faith and float to a leisurely walk brimming the water as I shuffle my feet in the tides.  And then I am human. . .I am frail; and when the connection to my saviors eyes is broken. . .I not only sink. . .I nearly drown.


Tomorrow we celebrate William’s graduation from this life into the next.

We will grieve the loss of our precious son.  And we will start our day begging the Lord Jesus to keep us above the tidal wave.  Eighteen years is but a second for a bereaved parent.  He is thought of daily.  He is missed.  Our oldest son misses his little brother.  The constant void he faces throughout life is not unnoticed by us.  William’s siblings younger than him that never met him talk as though they know him.  “Let’s make a birthday cake, mom!”  They can’t wait to meet him in Heaven.

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HEAVEN. . .is a very real place for our children.  We talk a lot about what it will be like, what the Bible tells us about it. . .we talk about the people we will see again or meet for the very first time.  Our children talk about Heaven as though it is their Home, their birthplace they once knew.  They are not scared to go there.  They long to see Jesus.  And I am jealous at times of their strong faith and love for Christ.

It is by the great grace of God that my children love their savior and long to serve him.  In my many years of parenting and failings. . .God has held them tight.  We pray nightly that the Lord will hold their hearts and keep them close.  And He answers.


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Was it really well with my soul when I sat grave side and sang the words through tears?

The big question this year. . .just where is my “It is Well with my soul.”  We sang this at William’s funeral.  Was it really well with my soul that I watched my little boy suffocate and fall limp in my arms?  Was it really well with my soul that we had to remove him from life support?  Was it really well with my soul that we had to choose a casket instead of a crib?  Was it really well with my soul when I sat grave side and sang the words through tears?

I came across “It is Well” by Bethel music this week.  And it became very clear that the little meaningless speed bumps I was enduring throughout the day were NOT well with my soul.  And I had to examine why losing my son seemed well with my soul, but my daily tragedies were not.  What was the difference?

The difference is that I sang “It is Well” at the funeral.  I sang it in the shower.  I sang it in the car.  I hummed it at night as I cried to sleep.  I sang it as a prayer to God to help me believe it.  Our tragedies become God’s triumph when we hand it to Him and beg for trust, faith in our unbelief, and the peace that passes ALL understanding that leads us to actually ride the waves to our “it is Well” and mean it.

To sing those words and actually thank the Lord for a life given and taken is only of God.  I am not a strong woman. I am not a supernatural human being.  I am a broken sinner that was saved and rescued by Jesus’ blood; and when I am drowning in the waves. . .He reaches down and pulls me to safety.  He looks me in the eyes and says. . .It IS well. . .It IS good. . .It IS my will and it is my perfect plan for you.

Then and ONLY then can I say, “It is Well” for me.

Take a moment and listen to this. . .it is repetitive. . .pray to God to make your tragedies well with your soul so that God receives every bit of Glory he deserves.  Fall at the feet of Jesus and sing this out loud, in your head. . .hum the tune.

“Through it all, through it all. . .my eyes are on you. . .and it is well. . .with me. . .”

http://www.youtube.com/watch?v=YNqo4Un2uZI

Happy Birthday sweet William. . .I see your eyes. . .I smell your curly red hair. . .I hear your sweet soft voice. . .