7-month-old Everley Yolkowskie was born with a rare condition called Congenital Central Hypoventilation Syndrome (CCHS). Here is a wonderful letter from her mother, Sarah:
Being a Mom has taught me a lot about life. What really matters. Who really matters. Being a Mom to Everley has renewed my faith in society, my love and appreciation for a caring, loving and giving community.
Living in the ICU can be challenging both mentally and physically. Not to mention a complete emotional rollercoaster. However there is always a bright side. Ours is this: the ICU staff have become family. They have literally helped us raise our daughter. And LOOK at her. She is happy, she is bright, she is smart and she is meeting all her milestones. We can’t take all the credit. Our CHEO family has helped us heal and nurture our daughter from Day #1. Not to mention the countless hours and effort they have taken literally taking care of us. Especially me.
I will never forget Day #1, just 12 hours after delivering Everley. I was sobbing following the news that she had to be intubated. A complete stranger handed me a piece of paper with her name and number on it. She whispered to me “It’s going to be okay, I promise.” I still have the paper. I can’t wait to call her and invite her over so our children can meet and I can give her a big hug and thank her for the impression she left on me. She didn’t know our struggle, our situation. But she had the heart to reach out.
As a Mom living in the ICU I follow my heart. Sometimes it’s hard to know what to say, sometimes I say nothing at all. I just smile. I never know what these families are faced with. Realistically it could be death. So I try and keep my SMILE ON.
Look at us now, 7 months later and IT IS OKAY! Some days are rough. Some nights are long and sometimes I can’t control the tears. But that’s okay too.
When I look at a Mom just entering into this world of having a sick, medically fragile child I just want to sit them down, hug, cry and tell them “IT’S GOING TO BE ALRIGHT!” There have been times I thought I was going to lose her. Truth be told it’s been very hard for me. I often feel like I have a wall up to protect myself. Mainly because I simply can’t imagine living my life without her.
I have so much respect and love for our Family here at CHEO. Everley’s team has dedicated countless hours, days, months working towards the best possible plan of care. The love and appreciation I have for our whole team is seriously overwhelming.
We may not have all the answers we had hoped and prayed for, but we have HER. And moving forward our aim is to provide her with the absolute best, normal, happy, beautiful life we can. Please know that each and every one of you has contributed to something BIGGER. She is going to move mountains. This kid is AMAZING. You’ll see.
Life is precious. Next time you catch yourself complaining about your life - take a moment. BREATHE. First think….. is this something I can control? Something I can change? If YES, then do it. Make a change. You’ve got one shot at life, don’t waste it.
If NO, then start the acceptance process. Ask for help, lean on others, be brave, ask questions, advocate. NEVER EVER GIVE UP.
A week after this blog post, Sarah posted some news:
LOOK MOMMA, NO TUBES!
I had so much anxiety walking the halls this morning on my way to see Eve.
Eve and I had an agreement that today if she was able to maintain her blood sugars over night she would get to wear her Tutu dress.
As I walked in the tears started building up… I could see her sitting on Nurse Jenn’s lap – SHE HAD HER DRESS ON. I just wanted to drop to my kness and cry in pure happiness.
SHE GOT HER NG TUBE OUT….. Eve is 100% orally fed now. This is INCREDIBLE.
For now we will praise this accomplishment, take lots of pictures of her beautiful face without tubes and tape, and refocus.