A Broken Heart (2)
(continued from part one) Michelle: The very morning that Katie was born another baby at my hospital was born with Down syndrome about an hour after my delivery. This family already knew that their baby girl had Downs. Their medical team was ready with a heart specialist to evaluate the baby in the nursery. I found out two weeks later
the chance that there would be two babies with Down syndrome born on the same day because this seemed to me to be pretty unlikely statistically. The head nurse told me that that they usually have two babies per year born with Down syndrome in their hospital. So I quickly got out my calculator and multiplied 24 hours per day x 365 days per year which equals 8,760. This means that the chance of two babies in the nursery at the exact same hour in one year is 1 in 8,760. Astounding! What lengths God goes to make sure of every little detail in a person’s life, in little Katie’s life, to make sure that she would survive her ordeal. Had this other little baby not been born on the same day as Katie, she probably would not have made it since we did not have a heart specialist trained in all the procedures to save her life.
I found out later that she had the nickname "Ice Queen". Michelle and I both were familiar with the phrase so I knew exactly what it meant. She brought Katie over and showed her to Michelle upside down pointing out that Kate had somewhat slanted eyes. She then said that's why we think she has Down syndrome. I left the operating room and was told to wait until a nurse could come by. What I did not know was that she was the "grieving" nurse. I spent the next few hours with her and had a meeting with the Ice Queen, who tried to justify her behavior by saying "What, should I have lied to you?" Of course the truth is always the best, but she could have been a bit more gentle. Something like "we want to run some tests and I'll talk to you about it in a little while”. I later found out that the hospital had a meeting with her about how she handled this situation and she was written up by another medical assistant. Unbelievable! The rest of the day was spent with family members explaining multiple times what had transpired.
John: Since I wanted to be totally involved in all our children's births, I had taken the Lamaze classes and was in the operating room when Katie was born. Michelle had spinal anesthesia so she was awake and aware of what was going on. The attending pediatrician called over her shoulder to the OBGYN "she has indicia of trisomy 21."
Later that night a got a phone call from a doctor at CHOP to tell me that Katie might not make it through the night. My heart seized into my throat and my mind filled with fear, confusion, sadness and dread. Actually, there are no words that can fully express the state of my emotions. The hospital room just kept spinning all around me. Exhaustion soon took over and I was able to sleep until the 6:00 AM nurse arrived by my bed. If you’ve ever been in the hospital overnight, you know the drill . . .
temperature, heart check, pulse, blood pressure, etc. etc. And then there is also the constant non-stop noise outside your room of nurses, doctors, visitors, making it near impossible to get any sleep. But shortly thereafter, husband John arrived to tell me the great news that Katie survived the night and the doctors were cautiously optimistic. She was in intensive care with the best of nurses and doctors and I just needed to “hope and trust”! How can a person be “cautious” and “optimistic” at the same time? He got the news that Katie had a heart defect called “a common AV Valve” which means that she did not have a four chamber heart, but functionally, only a three chamber heart which needed open heart surgery if she was to survive.
That day, November 2, 1989, our life stopped on a dime and was forever changed. This was something not even on our radar, but there it was. Have you ever experienced your life completely changing within 24 hours. Maybe you got a call from the hospital to be told that your son or daughter just totaled their car into a tree and that your child was in intensive care. Maybe your spouse has a sudden heart attack and needs open heart surgery. Or maybe one day your spouse or child at age 36 becomes a quadriplegic from a diving accident and he/she suffered a spinal injury. Any of these scenarios are heart wrenching and similar to a “sucker punch” in the stomach. Does any of this resonate? If yes . . . know that you are in good company.
These are examples of family trauma and pain that may even lurk in the back of your mind causing you to have great fear and anxiety. And for the family that it comes true, that fear and anxiety become their reality. And most people think, “That will never happen to me” and then sometimes it does.
How do you cope? What source of emotional reserve comes to your aid? There are choices that you can make. Some ask, “Why me, God?” or “Are you punishing me?” Or even, “God, I hate you for allowing this to happen! Where were you?” I chose to turn everything over to God because who else could really help me? Where else could I go? Put your trust in the Lord and he will give you the grace and resolve to accept everything and move forward, not knowing why or when or how. This was the moment for me to really put my faith in God. Lean into Christ and trust that everything will turn out right.
Artwork by Michelle White
Psalm 23:4 “Even though I walk through the valley of the shadow of death, I fear no evil, for You are at my side; Your rod and Your staff, they comfort me.”
John 16:20 “Truly, truly I say to you that you will weep and mourn, but the world will rejoice; you will grieve, but your grief will be turned into joy!”
Book of Job.
MYTH: It is OK to use the “r-word” if you don’t really mean it.
TRUTH: It is never acceptable to use the word “retarded” in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.
NDSS National Down Syndrome Society:
https://ndss.org/myths-truths#myth-most-children-with-down-syndrome-are-born-to-older-parents
Kate & Dad
$20.00
“Kate and Dad” is a black & white print done when Katie was three years old. The image contains all the joy possible with a toddler and her father. Size is suitable for framing in standard frames. Product DOES NOT INCLUDE MAT OR FRAME. Purchase mat separately. Reasonably priced with free shipping to continental USA. Print comes in one size 5” x 7”. $20
Michelle is a public speaker and enjoys visiting parishes, schools, and small groups to give her testimony about life with children who have disabilities. She also displays her artwork in churches. Contact her at 610-468-7112
