by pastorrobin | Feb 27, 2012 | Children, Moms
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.
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by pastorrobin | Feb 24, 2012 | Children
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:
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