A Meaningful Saturday…This is how we roll.
This Saturday was one of our favorites. We did ‘nothing’ and everything. No one left the house.
Couple Sues Because Their Child Was… Born.
A couple in Oregon are suing the hospital because their child was born with Down’s Syndrome. A CVS test during pregnancy said that the baby was healthy. Therefore, the couple went ahead with the birth. Now, after the baby was born with Down’s Syndrome, they are suing the hospital saying they would have aborted the child if they had known it had the birth defect.
FAQs for God
This post is written by my high school friend, Brandon Clay. In high school, we had our faith in God in common. We had no idea, 17 years later, we would share in suffering and new hope. This is a beautiful article on the honest questions we ask.
Our son, Knox Haddon, was born full term with no complications. Aside from being slightly underweight, nothing suggested he would live a different sort of life. A few weeks after his birth, our pediatrician noticed something strange in his eyes: there was no red reflex. It’s the same red-eye effect seen in some pictures – what normal eyes are supposed to do. Instead, Knox had infant cataracts which prevented the red reflex. Without surgery, the cataracts would obstruct his vision for the rest of his life.
We opted for the surgeries to save his sight. Two surgeries eventually turned into five surgeries to correct other complications with his eyes. The lenses were removed and he could only see with the help of contacts or glasses. All of this happened before his 6 month birthday.
But that wasn’t all.
Difficult Life Decisions
Throughout our journey with Kennady, we have made several key decisions.
I remember like it was yesterday sitting in the doctor’s office while he explained Kennady’s condition for the first time. Erica was 30 weeks pregnant and we had so many wonderful aspirations for our first baby as we entered that appointment. Now, 45 minutes later our world was caving in. We were shell shocked. At this point, he only believed her to have a condition called hydrocephalus (fluid on the brain). This condition causes a lot of developmental issues because there is so much pressure on the brain.
He ran through the list of possible blindness, no hearing, mental retardation, no mobility, and so on. This list was long and daunting. At one point, I literally pinched myself thinking I was dreaming. I wanted to simply go outside, reenter the building and start the appointment all over again. Surely, they had something wrong. In the middle of my wondering, I heard the doctor say, there is one other option.
A GRAND Revelation
Written by Rob Steele (Kennady’s “Granddad”)
At this point in my spiritual journey, Kennady is probably the most meaningful person in my life. For ten years I have prayed that God would miracuously transform her into the normal human functionality. I made deals with Him, finally hitting on one that I thought would be just right and that He would surely honor. I said “God, Let her have the choice to love you like everyone else has, it’s her birthright as a human.” Of course, somewhere down in my mind I knew that if she could do that she would have all the other abilities inherant with that level of thought.
Then one day while praying for her, God spoke to my spirit and said, “I have given Kennady to those who love her as an example of what you are to become. Instead of asking me to drag her down into the fallen state of mankind, seek instead to become like her. She is perfected in me.”
Kennady is now my beacon of light, an impossible hope in my human state who beckons me on to attain that which we were created for, not becoming one with humanity but becoming one with our creator.
After 9 1/2 years, a Doctor finally gave us Good News.
November 24th 2001, the day my sweet Kenna was born. On that day, we received the diagnosis of Alobar Holoprosencephaly. Alobar being the most sever form of the condition. The other forms of this condition are, in order from most severe to least,Semi-Lobar, Lobar and MIHV.
The past nine and a half years have left many wounds on this heart. Grief of what will never be because of those two words. Grief from knowing I will never have a typical daughter, never see her go to her first Daddy daughter dance, never play dress up, never have a group of girls come and play with her, never see her get married. The emotions have come for years.
This desert daily blossoming with her sweet smiles and innocent laugh, covering up the barrenness, the lost and the sadness of what could have been. Throughout the nine years the news has always been focused on the end, and what felt like relentless news of what would only get worse.
June 14, 2011, all of that changed for the first time.
Made Meaningful (why that name?)
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:
What People are Saying