Additional Needs

Birthdays and Breathing

Posted by Kara Melissa on 28th April 2020 Additional Needs, Advice & Support, Disabilities

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Sebastian was born not breathing. He was grey and floppy. But he was alive.

April is HIE Awareness month. One of Sebastian’s (many) diagnosis, subsequent to his cerebral palsy, is HIE, Grade II. Grade III is the most severe. I have never written about his HIE before. I have only added it to the list of his diagnoses on every hospital and application form I have ever had to fill out. Every form. The people who read those forms know what it is. The people who have children with HIE know what it is.

Hypoxic Ischemic Encephalopathy (HIE) is a type of brain damage that occurs when an infant's brain doesn't receive enough oxygen and blood. It is a dangerous condition that requires immediate medical intervention. HIE affects 20 out of every 1,000 full term births. HIE caused Sebastian’s cerebral palsy, so it’s not subsequent at all. In fact, it is the reason for his long list of diagnoses. Cerebral Palsy. Seizure Disorder. Gastro-intestinal Reflux Disorder. G-tube. Non-verbal. AAC user. Bla, bla, bla.

Sebastian’s birth was traumatic. It was not hard. It was not challenging. It was not exhausting. It was traumatic.

Okay, it was all of those things, but the most important word here is trauma. I never processed this trauma. Instead I immediately started caring for my baby. I was alone in a big city, far from ‘home’ and family. My husband was a journalist working very long hours and after his two-week paternity leave, had to return to work. I suffered extreme postpartum depression and I had no idea. We moved to Cairo. I found all the necessary therapists that I needed to before the move. I did not go back to teaching. I became a stay at home mother. I became a full-time caregiver.

I did not process the trauma. I am processing it now through (EMDR) therapy and it’s hard and it’s big and it’s life changing. I’m thankful.

Sebastian will be twelve on May 6^th. I got my ears pierced when I was twelve and my dad gave me teeny-tiny diamonds to put in them. It was a milestone birthday for me. Sebastian’s twelfth birthday feels like a milestone for me too. I always celebrate Sebastian’s birthdays BIG. Because he is alive. He almost wasn’t. This year for Christmas I bought him and his dad tickets to see the Toronto Symphony Orchestra play to the backdrop of Star Wars: The Force Awakens at Roy Thomson Hall. It was supposed to be on May 9^th. It was a double gift, Christmas and birthday. Which was good because those tickets were pricey! I got an email a few days ago that said this event had been postponed until May 11^th. 2021. Thanks coronavirus.

How do I celebrate Sebastian’s birthday big this year? How do I bring the people together in his life that have made up the beautiful community we are now a part of? How do I soothe my soul and celebrate the life that was so hard to bring into this world? Last year we had a May the Fourth Be with You birthday party and Kylo Wren and Rey came to teach the kids how to be Jedi’s. The year before that we went bowling. Before that we had an Animal Ambassadors, they brought rescued animals to our house for the kids to learn about, hold, and pet. He had just recovered from major hip surgery. We always have coconut ice cream sandwiches or special dairy free cupcakes with outrageous toppers at school.

I celebrate birthdays BIG.

Because we are here. Sebastian is here. He’s alive. He’s thriving (his clinics that follow his weight may argue, but I assure you, numbers don’t mean everything). Sebastian loves Star Wars. He has a service dog named Ewok. He loves chocolate and ice cream. He loves cooking shows and wants to be in charge of a café menu someday. He likes to judge who prepares the best pancake bites during our Saturday morning pancake breakfasts. He loves jokes and shares them daily with his step-by-step switch or eye gaze computer. He has friends. He makes them laugh and keeps them accountable. He loves music and dance parties and basketball and soccer. He is so much more than his diagnoses, but they are also a part of his identity too. They are also a part of mine.

HIE has impacted our lives in so many ways. It’s a thing. It happens to a lot of babies. No one ever told me that before I gave birth. I wish they had.