Almost six years ago I begrudgingly joined a moms group, not your typical moms group. Not the mommy and me play date groups I had expected I would join when I became a mom. I joined the group of heart moms. Although, it would take me three or so years to fully accept that I did in fact belong in that group. I soon realized that this is a group of exceptional moms…who not only love fiercely, are able to function on very little sleep, know more medical terms and procedures than any mom should know, and have the ability to pick you up when you think you just can’t go on. They get the significance of o2 sats in the high 90’s, the humor in seeing your child loopy from the Versed, how uncomfortable sleeping bedside can be, they know what it is like to make LIFE and DEATH decisions on a daily basis.
Unfortunately this group is large…with 1 in 100 children born with a heart defect, there are many heart mamas. I have had the pleasure of meeting many and have come to call a few my friends. I have prayed for their babies as they have prayed for Kate. I have celebrated their milestones and cried over unexpected set backs.
Last week our group experienced an incredible loss. A sweet, funny, talented, six year old boy unexpectedly earned his angel wings. Joseph Middlemiss better known to us as Joey was the epitome of what life is all about. At only six years old… he knew what he was doing. He grabbed this life by the horns and rode this roller coaster we call life… with a smile on his face and a song in his heart. You see as heart moms we get to mother these amazing heart babes… who are like no other child. For all they endure ( and trust me what they go through on a daily basis just to survive is enough to make a grown man cry) it makes them love all the more fiercely, it makes them see the best in each and every day even the hard ones ( and on this journey there are many hard ones) and oddly enough they give us their moms and dads the strength we need to make it through another day. They remind us never to take a moment for granted… they remind us to enjoy the ordinary…and to seek the very last best drop of every. single. day. Joey did that. Joey was able to do that because his parents Scott & Kate gave him the chance to do that.
You see, when you have a medically fragile child you have two options on how you will parent that child. Option One: You put that child in a bubble… you constantly live in fear of germs and everyone’s quality of life is a about a –1. Or Option Two: You are cautious and aware of your child’s medical needs, but you let your child live LIFE. Obviously, you know Mike and I are a strong proponent of Option Two given that we have always tried to take in to consideration Katy’s quality of life. At times those decisions have been harder than some of the medical ones. I can remember when we made the decision and finally somewhat reluctantly with the teams blessing we took Katy home on Milrinone. Something pretty much unheard of for a child her age. Kate said to me something along the lines of Don’t mess it up… meaning pave this path so someday we can do it to.
Because you see Scott & Kate chose Option Two of parenting for their beautiful boy and gave him every opportunity to live his life to the fullest. I hope when they look back that they can see although Joey’s life here on earth was much too short… his time here was wonderful… he had a beautiful, fun life. He lived more in his six years and touched more people in his short life then I have done in my thirty three years. He has inspired me to live a fuller life.
I am a better mom for knowing Scott & Kate… they reminded me when I sometimes question how important quality of life is. Do I wish I met you in a typical mommy and me group… I would be lying if I said no. Regardless… I love you, I am here to support you in any way I can and I will never ever let Joey be forgotten.