In November, I was asked to write an article for the Loeys-Dietz Syndrome Foundation’s newsletter. I thought I would share it with you too, because it’s been such a theme in my life for the past 2 years. Overcoming Fear. It grips all of us in different ways. This article may be written toward a specific audience, but the theme is universal. Whatever your fear is, identify it, and kick it to the curb.
For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline. – 2 Timothy 1:7
So, here’s the article, but with more pictures (insert winky face emoji that I refuse to actually use because I am not a 12 year old girl):
New Year’s Eve
As a parent with a child that lives with Loeys-Dietz syndrome, please allow me to write to you from that perspective and filter. I think we are in a select group of human beings that know a deeper meaning of being thankful. Think about it, we have kids that are eligible for ‘Make-a-Wish’. I know most of us have navigated through some very intense medical situations on a daily basis that no parent wants for their child. EVER. Scout’s road so far medically has been a rough one. I’m sure you can relate. Like really, I’m sure you can.
I’ll be honest with you, I can’t read a lot of other people’s LDS stories for too long. It gets me snuggling up in a blanket next to my good frenemy, Fear. And then we stay up all night just thinking about the future. The “what ifs”, the “that will happen to Scout because that happened to (insert yourself or loved one here)”. Now, don’t get me wrong, I care deeply for every single LDS warrior and the people that fight right beside them daily. We are one of those families that are consumed by this specific mutation and how it affects our child. We as a community need to communicate to solve these mysteries together, like the stuff doctors don’t have answers for. We run into a lot of those puzzles. It’s the LDS families that have helped us try to get answers. But guys, let’s be real. Sometimes you have to shut down the internet. Shut.It.Down! Along with what we all struggle with on a daily basis medically and emotionally, there’s the daily news(mostly all bad), politics(yikes), entertainment news(voyeurism), and then there is the Pintresty stuff about what a horrible parent you are because you didn’t use mason jars, bunting, and vintage candy at your child’s birthday party. I’m just over here thinking, “I’m thankful my kid is having another birthday!” Anyway, one more time and then I’ll leave it alone. Shut it on down! Oh, and stay off of WebMD.
If you want to know about Scout and her medical bullet points here they are:
- Born with bilateral club foot, cleft-palate, interesting looking heart, blue sclera, the fingers, the chin, the eyes, the chest, the stretchyness, the skin, and absolutely the most beautiful soul I have ever known.
- PDA ligation at 1 month old after congestive heart failure
- Officially diagnosed with LDS at 1 month old (Thank God for a good hospital and staff with awareness).
- Numerous procedures and hospitalizations for various fixes or illnesses throughout her life
- Aortic root replacement at 2 years old at Johns Hopkins performed by the great Dr. Cameron and Dr. Vricella
OK, now that that is out of the way, here’s the other part of Scout’s story: She’s 5, and she has a huge love of lions. Right now, Disney’s Animal Kingdom lodge is her heaven on earth. Her imagination is enchanting and so is her little voice. I’m not sure that a day goes by that she doesn’t tell me that she loves me at least 30 times. She avoids conflict and she is a dawdler. When her father or me tell her to wait for us to help her with a task, she usually doesn’t listen, and then when we get on to her about it, she’ll say, “I’m sorry, I just get so excited”. Her favorite food is refried beans from El Ranchero, and is learning how to compliment her food with various other foods (an idea she picked up from the movie ‘Ratatouille’). If someone else gets hurt, she genuinely wants to know if they are ok. She doesn’t want me to sing to her because she “cries happy tears”. She has a little brother that was born a year to the day she got out of Johns Hopkins for her aortic root replacement. He is ALL boy. She will randomly come up beside me, kiss me on the cheek, and tell me to “Smile all the time”. She is strong, she is courageous, she is brave, and her smile could end wars. Her hugs are pretty magical too.
For us as parents, especially me, something we had to start fighting was fear. Our daughter has fiercely fought for her life on more occasions than anyone, let alone any child should have to. Fear can keep us from letting her live it. If I listened to fear, I would stay in a 10 mile radius of Vanderbilt Children’s Hospital at all times and never sleep. I have to tell fear to get behind me on a regular basis. But let me tell you what happened when I started realizing something about fear. Fear is a liar. Fear wants you to stay home and put bubble wrap on your medically fragile kid and watch ‘Calliou’ on Netflix all day. And NOBODY wants to watch ‘Calliou’ all day. Am I right, ladies?
So here’s some of the things I want to tell you that we have gotten to experience as a family since we started kicking fear in the proverbial crotch. Give Scout a sibling/friend for life, take a trip out west where Scout got to fish for trout, wake up in a cabin surrounded by mountains, watch buffalo cross the road right in front of our car, see wolves, and bears, and go on the tippy tops of the highest mountains. We Moved 50 minutes away from Vanderbilt to a farm where we get to wake up to cows, and eat eggs from our own chickens that Scout and her brother got to raise. She has a cat, and a dog, and a pond, rocks to throw in that pond, and a giant rock to stand on so she can roar like a lion. We see sunrises and sunsets and can actually see stars at night. She has good kids around her that don’t understand everything she goes through, but they are kind, and careful. This is just the beginning. We will continue to fight fear and give our family the most abundant life we can and make memories that don’t involve hospitals and doctors’ offices.
When we were at the Loeys-Dietz Foundation conference this summer, I observed something very beautiful. I saw relationships being nurtured and people that were invested in the human experience. I saw people that were present in the moment because they know how precious each moment is. I saw a group of people that truly need each other. Through our circumstances we have become a community.
You know how preachers sometimes say, “This lesson is for me”? Well, this one totally is…for me. Allow me to leave you with these last thoughts. If fear comes knocking, look fear in the face and tell it that it is not welcome in your life. You or your loved ones have fought much too hard for that life. Go out and live it. Happy Thanksgiving. I’m thankful for you, the life you are living, the people that are working to make a better life for those with LDS, and the community we get to be a part of. Peace.
on the tippy top of a mountain in Montana
very first time fishing (in a stream in Montana…nothing was caught, but it was peaceful and beautiful)
a built in BFF
a view from the front porch at the farm house, and the chickens
pulling Ash up onto Pride Rock (pride rock differs depending on what rock is available at the time)
almost literally loving this cat to death
fall on the farm
Just one of the incredible sunsets we get to witness every night. Sorry that that pink vest overpowers what is in the background.
Scout with some lovely girls at the Loeys-Dietz conference this summer. This was the first time all of these girls got to hang out with other kids that actually understand each other’s day to day.
snow from this saturday morning
one more sunset for your enjoyment