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This story is written by my dear friend Jana. She introduces us to her life with her son who has been diagnosed with 22q11.2 also know as DiGeorge Syndrome and VCFS -Velo-Cardio-Facial Syndrome, and Shprintzen Syndrome. She blesses us by sharing, with raw emotion, her experiences as she parents her delightful little boy. He faces a future that can only be described as unknown. Those of us who are parents can only imagine the terror Jana and her husband, Bill, must have faced with each new diagnosis, each obstacle that Jana describes below. 
I can't wait for you to meet her. You will find her strength unparalleled, her honesty is pure and will send a chill up your spine, and her powerful story will touch the depths of your heart forever. Clearly she is the kind of mother we all strive to be but hope we never have to be.
This post is long but every word is a blessing so please be sure to read through to the end. You will not be sorry. Meet Jana:
Jana's Story
I'm your average 45yr.old mom, but recently I found myself compelled to do the not so average thing (at least for me). I found myself sitting in a chair similar to a dental chair but instead of soft calm piped in smooth Jazz, the music was something loud, angry, and unfamiliar. Just like this whole experience.
I sat there a bit nervous but resolved as I extended my right arm for inspection and last minute preparation before my procedure was to begin. A sweet faced, very professional young man named "Saw Blade" explained a little about what to expect, with his gloved hands and little gun like device. 
He put the machine to my skin and begun to outline what was to become a strand of D.N.A. with a break in it. Inside the break is a cryptic series of numbers and letters. 22q11.2, in the background flames and my families initials in the thick of the fire. What would drive a seemingly reasonable (even boring vanilla) person so far out of her comfort zone?
The real story started 8 yrs ago. When my husband and I were considering adopting our 2nd child. We decided when our child was 3 we would start working on it. The day before her 3rd birthday we found out I was pregnant. We were stunned, my husband made me pee on 3 sticks before he would believe it! I was 37yrs. old but in good health. It was a very straight forward pregnancy, I didn't even get sick. All my check-ups were fine.
He was born 10 days early and weighed 8lbs. everything was good, until it came to feeding he just could not latch. We saw all kinds of lactation people. We finely found 1 bottle that worked for him so I pumped for 4 months, determined to get at least some breast milk in him.
On his first check-up his Dr. looked him over listened to his heart then again and again and again. Finally the Dr. looked up and said "your child has an issue with his heart. I'm sending a referral to Children’s Hosp. please make an appointment soon." I suddenly felt sick.
The cardiology team at Children’s ran test after test, indeed he did have an issue with his heart. He had 2 little holes that were creating a short cut through his heart. The Doctors figured that was causing his feeding issues, he was just having to work extra hard. His condition was not life threatening, yes he would need open heart surgery but it was best to wait until he was a little older, stronger, bigger.
All the while, as we waited, eating was still a struggle for him. He had reflux, he was extremely constipated, had constant ear and sinus infections, eczema, his breathing didn't sound right to me. I had remembered reading heart and asthma can go together (later we found out he did have asthma), and some other quirky things that made
