Author: Lauren Backe Starlight Mom
Being a mom is the hardest job there is. But, also the best, most rewarding job. At age 33, I was “living the life” with an adorable five–year–old and loving husband. I was on my way to child number two, hoping for a happy, healthy baby to add to our loving family. And then it happened: The doctors told us our family’s “happily ever after” was going to be a little different than we expected. Now, I was going to learn how to be a mom to a critically ill child – and we were still going to be living our happily EverLY after.
Everly was born with congenital heart defects called interrupted aortic arch and ventricular septal defect –a big hole in the middle of her heart. Interrupted aortic arch means that when she was born her body was not getting oxygen and blood flow to the lower half of her body. At just three days old, Everly had her first open-heart surgery and will have had three before her first birthday. Everly is expected to have open heart surgery every three to five years until she can have an adult-size tube with a valve inserted. My hope is that technology finds a way to make pieces grow with her and she won’t need endless surgeries after that. But for now, she needs care around the clock, every single day.
My days and nights resemble very little of my previous life. My husband and I sleep in different beds. Matt, my son, Jack, and the dogs all share our bed. And I sleep in Everly’s room so I’m near her crib. Yes, people may judge, but it works for us.
Jack impresses me every day. He comes home from school, takes off his shoes and goes straight to the bathroom to “scrub in.” (we can’t have any germs in the house.) Then Jack asks, “How was Ev’s eating today? Still doing OK without the feeding tube?” I wish he didn’t have to worry about these things at just six years old, but I am so impressed with his strength, depth of understanding and compassion.
Our life is like a GPS that is constantly searching for service and recalculating our route. It can feel like we’re on the right path, but then all of a sudden, something happens and we have to make a u-turn or veer off our normal route.
Right now, we’re driving uphill. Everly is currently in the interstage, which is a critical period between surgery #1 and #3. Surgery #2 just bought us some time for her to grow. Everly’s heart is essentially functioning as if it were a half a heart and she is operating with about 75% of the oxygen you and I operate with. We tentatively scheduled her open-heart surgery for mid-July. We’re hoping her heart can hang in a little longer so we’re further away from cold and flu season.
I often get asked, “what’s it like to take care of Everly.”
- It means I check and record her oxygen saturation levels and heart rate multiple times a day.
- I have to weigh her before every meal in hopes she gains 10-30 grams per day.
- Every meal I’m saying in my head, “Please eat, please eat, please eat.” Every feeding we are holding our breath to make sure she’s getting enough to keep her heart shunts free from dehydration.
- And if she doesn’t eat enough, I insert an NG feeding tube about 20 or so cm into her nose down to her stomach and check that the food is actually in her stomach (not lungs) with a stethoscope.
- I can’t let her cry for too long because that makes her heart work too hard and too fast which is dangerous and it means she burns too many calories and we need her to gain weight to get to the next surgery.
- I wash my hands and disinfect the house so much that no amount of lotion will keep them from cracking and bleeding.
- It means isolation most of the time right now, especially in the interstage. The only people allowed in our house are those who have had several recent vaccinations, don’t smoke and promise they aren’t sick or haven’t been around anyone sick. Heart babies can’t handle the flu.
- And I always have an emergency hospital bag packed for Everly and me.
This all may sound hard or overwhelming, BUT every single thing is worth it. Every hard day, every hard moment, every sleepless night, she’s worth it all.
Being a parent of a medically fragile child means soaking up every second of happiness. It means living in the moment. It means choosing joy and finding it in each day. It means celebrating small successes that seem ordinary to most people. It means not sweating the little things. It’s realizing what really matters in life. (And the things that don’t).
To all the moms or dads reading this, I have one piece of advice: perspective is everything. Your mind is a powerful thing. You’re allowed to feel your emotions – go ahead and cry, yell or scream, but remember you are lucky. Your beautiful child is alive. Try to use your time and energy and thoughts wisely. Make it a goal to start each day with positive energy and it will rub off on people around you. Did you know you can trick your body into being happy by smiling? Fake smiling actually leads to you being happier. And then find something positive in every day before you go to bed each night. Every day may not be awesome, but there are always good things you can find. You can do anything for a short time. Repeating that in your head during hard times is imperative, so chunk hard moments into manageable pieces. And then celebrate when you get through that “short time.” Reframe your thoughts. You could easily get wrapped up in all the things you “have to” do, but when you look at all the things you “get to” do, it makes things so much better.
To the new mom, the tired mom, the mom who hasn’t taken a shower in two days, the mom who is smiling on the outside, but maybe a hot mess on the inside: Happy Mother’s Day, and remember, “Your greatest contribution to the world may not be something you do, but someone you raise.”