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, about a month ago, 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.
Last week, 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!
Robin & Erica,
I love this! What an impact you will have on so many who question God, question themselves. Kennedy is amazing. And the way you have journeyed through this with a quiet yet bold grace is a miracle from God.
Wow…I am so moved by this. Thank you for sharing it.
Beautiful! I’m stirred on the inside and very touched.
How beautifully this is written! I’m so proud of you all!
I remember hearing about her short life expectancy…..weeks, months, a few years…. 10 years+….. Doctors only know a part of the story…. God knows all! Oh, how we love, Kennady!
Wow. What a great way to help other people. I love it.
Thank you for sharing Pastor,God is so good
Oh, great God! I was so moved by this. Thank you so much for sharing. And I want to thank Kathy for sharing this on FB, she is truly an awesome lady
Kathy is definitely an awesome lady. Thanks for your comments
I love this!!! You guys are so amazing. Thanks for sharing this.
Robin and Erica,
Thanks for sharing your wonderful story and bringing meaning to life! I’ve always admired the strength you both have shown in the face of what everyone else says is “adversity” or a “tragedy.” Kennady is an amazing, beautiful girl….so full of life. I remember hearing a report once from someone about her condition, saying that she may never smile or feel emotion like others. Every time I see a beautiful picture of you all, I see that she is smiling ear to ear, and I’m reminded that she has touched so many souls in her short life. She has an incredible soul which is evidenced and felt and known by the impact and purpose she has as a part of your family! Thanks for understanding and boldly sharing the wisdom of God’s purpose in ALL life. Love y’all!
I understand how u feel, my lil girl is 14 mths old with Hydro i was told the same thing that our baby girl would only have 24 hours and if she made it past that. that she wouldnt have a chance at a normal life. every time we end up at a hosptial and drs hear what she has i always have to hear well do you guys have a plan do u understand what your daughter has, i just wanna scream at them and tell them my baby girl is 14 mths every one told us she wouldnt make it to be 6mths or a year old. she is stronger then anything u can tell me im going to stand by her stand and do whatever it takes for her to be here with her parents! Im so gald to see and hear that im not the only one who is going thru this and fighting for there child!! thank you for sharing your story.
This is beautiful. Ten minutes after my daughter was born I was told by a doctor that my daughter would not live to see her 1st birthday. Rachel just turned three on the 22nd of this month. Little did that doctor know that Rachel has the Lord’s love to keep her going. 🙂
Wow (tears in my eyes) how this will encourage other families who face similar situations! God is so good! Thanks Pastor and Erica for sharing with all of us. You spoke a word a couple of years ago that made my heart move…. “Kennady doesn’t judge you, she does not care what clothes your wearing, what race you are or if your in a good/bad mood, etc….she has taught you about life and how precious it is, just like she is! I reflect on those words when I start to feel “whoa is me”….
ps I love the name!
Beautiful Robin! I’ll take it one step further. My first baby never even took a breath. But he was created by God’s hand, and indeed, had a very meaningful life, albeit in my womb. Love you, Erica, Kennady and the boys!
Thank you for sharing! My husband and I have a 4 month old son who has been given a poor prognosis with his diagnosis of a rare syndrome. I created a fabebook page for him, and it’s titled…Austin, Our Fearfully and Wonderfully Made Miracle!!
Love in Christ, Lindsey
Lindsey, thanks for sharing that! We will be praying for Austin!
Wow! I can’t believe that was in a medical record! Kenna you are awesome! Robin and Erica y’all rock!! Miss y’all!!
This is absolutely beautiful. God bless you for turning your story into a ministry. So impressed to have stumbled upon this in Albuquerque, New Mexico!!
All that can be said is you both were always the right choice to parent and love such a wonderful little girl. God new she needed excellent parenting and lots of love and he chose you two.
Thank you, Joshua! It is by the Grace of God!
Thank you God for the beauty of your Truth revealed in this willing family! We rejoice over her manifested ultimate beauty!
Kennady was perfect and too good for this world. That’s why God needed her back in Heaven. Who cares what the doctor wrote because her life was meaningful…it meant something great to her mom and dad!
Stevie, thanks for the comment. She is still with us on earth at this point.
Thanks for sharing your story. I consider my sister Annie to be the single most influential person on my character. I look forward to reading more.