Bienvenue à Paris: A different perspective on taking care of a medically fragile child.
There is a popular essay about raising children with special needs. It is called “Welcome to Holland.” You can read it here.
This essay has provided great comfort over the years to parents and caretakers of these precious children, myself included. After giving birth to my sweet Jett I knew that life was going to be different, but it could still be good. Life was good, but at the same time, incredibly heart-wrenching. I would often read “Welcome to Holland” to give myself this much-needed reminder that the special needs life can still be full of joy and goodness.
However, after learning of my child’s diagnosis and ultimate prognosis and ultimately, after watching and feeling him take his last breath in my arms, I have felt the desire to give this essay a little “remix.” While I love “Welcome to Holland,” it barely scratches the surface of what it was like for me to care for a medically fragile child.
Caring for a medically fragile child is raw and real. It’s unpredictable and scary. Unless you’ve actually lived it, it is hard to describe to people…you know the ones I’m talking about. They mean well and they want to understand, but they’ll ask questions like “So, when will he be able to walk?” “Oh, he looks so sleepy. Does he always sleep this hard in the middle of the day?”
At times I wanted to respond, “No Susan, he won’t be able to walk…like, ever. But what I’m actually worried about at the moment is the fact that his chorea is so bad and painful that he can’t even sit in his wheelchair.”
Or, “Yes, Pam, he looks sleepy because he just had a major seizure…the tenth one of the day. Any other questions?”
All sarcasm aside, people really mean well. I actually love when people would ask questions because it gave me the opportunity to offer a different perspective on what they viewed as "special needs". What it comes down to is that unless you've raised a medically complex child, you just aren't aware of everything involved.
This remix of an essay is entitled "Bienvenue à Paris (Welcome to Paris)" and is dedicated to all you mamas and papas out there who give it your all every single day to raise a child that you may outlive. I am grateful that I know you. I'm grateful that our paths crossed. This is a club that no one wants to be a part of, yet when you become part of the club, you learn what real, unconditional love looks like. You are true warriors. I hope this essay brings to light how powerful our community is. You are not alone. We are in this together ALWAYS.
Bienvenue à Paris (Welcome to Paris)
Having a medically fragile child starts out like any new parenting experience. You actually have no idea you’re going to have anything but a healthy baby, so you prepare just like any person would.
Envisioning and planning your new life as a parent is almost like preparing for the job of your dreams. After years of hard work in culinary school, you have developed the skills and knowledge to become a competitive pastry chef. You have combed through every book on the subject and have spent countless hours of hands-on experience in the kitchen.
The day has come and you have been hired as the executive pastry chef at a world-renowned bakery on the Champs-Elysees. The Champs-Elysees! Not only are you excited to put into practice what you have learned, but also get to start a new life in Paris, France. This is everything you have visualized since you were a little girl.
You can see it in your mind now: The twinkling lights of the Eiffel Tower, the soft glow of lamp posts nearby, the sweet and alluring scent of pastries and croissants wafting past on the light breeze, and you walking hand in hand with the love of your life.
You both look up to the top of the Eiffel Tower, the structure itself so tall you can hardly see where it ends and heaven begins. You and your lover are completely absorbed in its magical splendor and you embrace each other a little tighter. This really is the definition of perfection.
Back to reality, traveling to Paris has been a long and tedious process, but you are ready and prepared. The anticipation you feel is palpable. As the plane glides into the landing pattern and you tug on your seatbelt, you can see the mesmerizing lines of streetlights and cars below. You squeeze your lover’s hand. You have made it! You have landed in Paris and your new life awaits. Delicious baguettes, mille-feuilles and soufflés will soon be filling the windows of the bakery!
One foot steps out of the plane and the next one follows. You take a moment to breathe in the world around you, take in the scenery, but instead, immediately get distracted by someone running frantically towards you.
“Mademoiselle!! Monsieur! Please come with me. There’s been a change of plans.”
In an instant, your world as you know it, is turned upside down. You’re inside a moving car; yet don’t remember how you got there. It’s speeding down the freeway to a destination unknown. Out of the rear view mirror, you see the lights of Paris, almost a blur now. You are getting further and further away from the city.
It’s dark, really dark, except for a bright glow in the distance.
Where are we going? What is this place?
The car stops abruptly and the driver motions for you and your partner to get out. Your bags literally get tossed out of the car onto the road before it speeds away.
The smell of smoke immediately overtakes you. The countryside is ablaze. You can hear the sickening crackle of trees burning to the ground. Your eyes begin to burn. Your lungs gasp for air, where there is none. You look around panicked, searching for your driver. An EMT. The fire department. Anyone!
This is not the Paris you expected. No guidebook you read said anything about fires. You don’t have the skill set to put out fires. You haven’t been trained for this!
However, you have no time to think. You jump right in and begin helping. You have no idea what you’re doing, but know that you need to help or else the fire is going to spread.
There are others there. They are working tirelessly to hose down the flames and contain the damage.
You make eye contact with one individual and for a moment your hearts connect. Amidst the raging fire, she winks and says, “Bienvenue à Paris.”
Not knowing whom this woman was, you instantly want to know her story. How did she get here? Did she expect to be sightseeing down the Champs Elysees as well?
A man hands you and your partner a tool. It’s some sort of axe and garden hoe combo. “Here, use this. Dig. Get rid of as much debris as you can. That way, the fire will run out of fuel and eventually fizzle out. There’s no easy way to do this. It’s going to be hard work and it might hurt.”
How did he know how to put out the wildfire? There’s no time for questions. Instead, you both put your heads down and get to work.
Hours and hours go by.
You continue to dig and clear out the dry shrubs and trees. You are covered head to toe in ash. Your entire body aches. You begin to develop blisters on your hands. You didn’t know this type of exhaustion exists.
Daylight has arrived. You look up. The fire is beginning to finally subside. For a moment, you take in the scene. What was once a raging wildfire has now become a small, much more manageable burn. Smoke still fills the air, but it is no longer suffocating you.
Wow, there are a lot more people here than you thought. Just like you, these men and women were covered in dirt and ash. They looked tired and haggard, drained of all energy. The sweat on their bodies began to glisten through the muck that coated their arms and faces.
Some people were resting their foreheads on their hands atop their shovel completely shattered and fatigued and others were embracing, literally holding each other up.
These people were broken and weary, yet there was something about this group that radiated. These people were warriors! They didn’t expect to be placed in front of this fire, much like yourself, yet took the challenge head on without any prior knowledge or skill set.
You take a moment and send up a prayer thanking God for this fire. You thank God for this fire that was now going to make way for an even more beautiful and lush countryside. A beautiful, new life.
You, your partner, and new friends make your way back to Paris with a fresh, new perspective.
Sometimes the fancy architecture and lights of Paris aren’t what you need. Sometimes the countryside is what your heart craves and what you will always return to, fires and all. The countryside will give you relief on your hardest days.
The countryside will remind you to take a step back and enjoy the simple things.
For in the countryside is where you learned to become someone stronger than you ever thought possible. In the countryside is where you found your people, your tribe, a team of warriors ready to take on the next challenge.
In the countryside is where you can always wink and say, “Welcome to Paris.”
Written by: Tennille Boseman (Jett's mama)