Why It's Called MadeMeaningful

We had ridden the roller coaster of emotion. Our daughter is born! What a miracle!… She has a horrible diagnosis…She is recovering well!…She looks different than normal babies.  We were up and down. Up and down.  We are so grateful for the multitude of friends and family that surrounded us during these hours of celebration, questions, and loss.

Two days after Kennady was born (Nov26), I was standing by Kennady’s crib in the neonatal intensive care unit at Brackenridge Hospital.  She had tubes hooked up everywhere.  Machines were blinking stats to hospital staff. There were nurses walking around and probably 30 other babies in cribs very close by.  We had to wear gowns and face masks in order to protect the infants from potential illness.  I looked down at the foot of the crib and I saw something that I would never forget the rest of my life…

At the foot of the bed was a clip board of doctor notes.  It is typical to leave a chart at the crib so doctors and nurses on other shifts can keep apprised of the patients situation.  I just happened to glance down at the last line of the progress report.  The doctor had written:

“The parents understand that there is no chance of their daughter having a meaningful life.“

I remember anger growing inside.  I thought, “My daughter has meant more to me in the last 2 days than you will ever mean to me.”  I was ticked.  How dare a doctor determine the ‘meaning’ of a person.  This experience was just the beginning of our journey to learn first hand WHERE meaning comes from.  What defines meaning. The value and dignity of LIFE. What is beauty?  What is normal?

For ten years, I have thought about that moment at the crib, and have always wanted to actually go look up Kennady’s medical records to see if they actually reflect that statement.  I wanted proof.  At the same time, I thought surely I read it wrong.  Surely, the transcriber edited the comment to make it more medically correct.  In fact, one time we mentioned it to our palliative care doctor and she could not believe that a doctor actually said that.  So, in 2011, I went through the process of accessing Kennady’s records.  They told me that it would take several weeks to get the records and that I could come to the hospital to find the exact record.  Kennady was in the hospital 42 days during that period. You can imagine how many pages of records that included.

A few weeks later, I received the call that the records were ready and I scheduled an appointment to review them.  I was nervous and excited all at the same time.  I turned the 6th page of records and saw this:

Notice a few sentences into the summary it says, “All questions were answered.”  Yeah, sure.

I couldn’t believe it.  There it was.  I was emotional.  All over again, I faced the lies of the enemy.  I am sure that the doctor was simply used by our adversary to distract and confuse us from what God had originally intended for Kennady.

Erica and I are passionate about reminding people that culture and society are messed up.  Therefore, we shouldn’t rely on culture and society’s definition or acceptance of our value and meaning.  When we ‘lean on’ secular definitions of significance, then we are left at the discretion of emotion and the majority vote.  If everyone says that skinny is beautiful, then we flock to that.  If culture says that intellect or financial success has the most value, then we view ourselves hopeless when we don’t match up.

We stand on the Word of God alone to define everything.

Psalm 139:13 For You formed my inward parts; You covered me in my mothers womb.14 I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well.15 My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth.16 Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them.17 How precious also are Your thoughts to me, O God! How great is the sum of them!

Read about how her condition affects her everyday life and function.