After years of journaling my life I have finally decide to start a blog. In my 43 years of life I have been a daughter, sister, mother, aunt, 9 to 5-iver, domestic goddess, starter of non-profits, fundraiser, advocate, special needs mom, self proclaimed expert in ECMO& CDH, foster parent, wife, caregiver, entrepreneur and now finally a blogger.
I would love to one day write a memoir. This is just the beginning…
A little about my son John; he is 12years old. He was born with a rare birth defect called Congenital Diaphragmatic Hernia (CDH). This is where he had a hole in his diaphragm in utero and his liver and bowel grew up where his lungs should have been. He was placed on ECMO, a heart and lung bypass machine, for 14 days at birth and given a less than 10% chance of survival. He spent over 13months in the hospital after birth. The short version of his life is he spent 8 years on a ventilator via his trach, an addition year with the trach and finally Decannulated in March of 2013. He has had 4 surgeries and over 50 procedures, overcome many illnesses including the flu which almost killed him twice. He has epilepsy starting at age 2, his first seizure lasted 8 hours before it was finally controlled with medication. He is also Autistic. With that all said, he is one of the sweetest clowns you could ever meet. He loves to make people laugh and strives on positive energy. He is an amazing way of making people feel special, that’s his super power.
This is John at Birth:
This is our family today: