These are my 3 kids.
Buying a 3 foot 6 inch coffin is at the bottom of every parent’s things to do list. Five months ago today, my kindergartner, Emmett took his last breath as my wife and I held him telling him how much we love him and how amazing he is. It was 5AM in Portland, Oregon when he passed. The sun rose without him and my life forever changed. This will be my 9th Father’s Day as a Dad, but will be more special then ever as I remember the single greatest honor and privilege of my life - to be Emmett’s dad.
At around 2 years old, Emmett’s nervous system began to disappear. One hundred doctor appointments later he was diagnosed with Krabbe, a medium rare condition that affects 1 in 100,000. During the next 4 years, Emmett lost his skills (walking, talking, eating, seeing, moving, blinking, coughing and many more). Caring for him was 24/7.
After meeting with one of his 17 doctors, we learned that Krabbe was treatable but only if diagnosed at birth through standard newborn screening at 24 hours old. However, State of Oregon made a choice, 9 years ago, not to include Krabbe in the panel of tests. My wife has taken it upon herself to create a bill at our state Capitol to add Krabbe so no other Oregon child with Krabbe has to live and die with this wretched condition. Ten states currently screen for Krabbe (per Hunter's Hope Foundation), shout out to New York, Missouri, Kentucky, Tennessee, Illinois, New Jersey, Ohio, Indiana, Pennsylvania, and Georgia! This is only one facet of Emmett's story- I would need to make a documentary to properly tell/show everything, any film makers out there?
Zoom meetings in the hospital next to Emmett’s side became my new normal. I’m beyond grateful to work for an amazing company (Motorola Solutions) where managers (Randy Welch) value family and a team that jumps to help when Emmett needed me most.
This Father’s Day I’ll leave you with (some of) what I learned from Emmett’s life and death.
1. Squeeze your kids extra tight and tell them you love them. Get on their level, look them in the eyes to make sure they actually heard you. Do this often.
2. Be patient with them. When they make a mess, talk back, disobey - just remember how fortunate you are that your child is healthy enough to even do those things.
3. Raise your child in the way they should go. If you are blessed with a gifted and talented little one, or they require more attention than you ever thought possible - meet them where they are at and help them be their best.
-Joe Monaco
PS - if you are still reading this and you know someone grieving, they may not mention their loss, but it’s on their mind every day. Say you have been thinking of them too.
