Life has this funny way of taking you on a ride that ends up being far different from whatever you imagined when you got behind the drivers wheel. Even if you have a perfectly printed list of Google maps instructions, and have programmed your GPS to accommodate traffic, you will still be shocked and surprised at where you end up in life. I realized that there were certain things I would go back and tell myself, before we started the journey with a child who is medically complex. I think I would just tell myself this:
You’re gonna be alright.
Just like the lyrics of the Bob Marley song, you will someday sing to your baby girl as she lays struggling for breath, everything is gonna be alright.
It will not feel like it many days. You will spend many long hours wondering how exactly this is all going to turn out right when it all feels most definitely very wrong. You will learn to stop counting time in weeks or days, and instead learn to take things minute-by-minute, hour-by-hour. You will learn that being “alright” will change in meaning. That what you once thought of as being good and OK will suddenly be a pipe dream, and you will settle for things that would have once shocked you.
You will learn a whole new vocabulary. But this is OK because you have always loved words and meanings and using big words just to watch people’s faces. This trait will come in handy someday when you are schooling medical students and resident doctors (who you will take to calling “baby doctors” or “doclings”) about how to pay attention to your baby’s labs/vitals/painful screams. You will find that words like “thrombocytopenia” and “electroencephalogram” will one day roll off your tongue as smoothly as the swear words that you will find yourself dropping far more often. You will be shocked and amazed to learn that while you have always hated numbers and math, that you have this sudden capacity to store two months worth of CBC values in your head so you can glance at your child’s lab results and know instantly whether she is getting an infection.
You will realize how very precious “outpatient time” is. No one can prepare you for this. You THINK you appreciate your life as it is right now, but until it is replaced with long days in a hospital, standing at the bedside of your sick baby, you cannot possibly know what it is to appreciate life as it is right now. But this is a good thing.
You will realize that as your friends have their babies, and those babies, born around the same time as yours, start to do things that your baby is not, and may not ever be able to do, this will tear a little piece of your heart out irrevocably. But it will be replaced with something new. It will be replaced by this nearly palpable sense of pride in the things your baby CAN do. While other moms take for granted that their babies coo or smile or lift their heads up, the first time your baby does these things—months and months and months after you have given up hope for them—you will scream with joy so loud that people will think you have won the lottery. And you will have. The richness of watching YOUR baby hit milestones is unrivaled. It is heartbreaking and hard-fought and horrible to watch them go through therapy sometimes but it is oh-so-worth-it in the end. You will not even understand this sentiment until you have lived it.
You will learn to adjust your expectations, for your baby, for yourself, for your friends, for everyone around you. You will learn this because if you don’t adjust them then you will be hurt on a daily basis. So instead of lashing out in pain, you just learn to rely solely on yourself. This works for about nine minutes, and then you realize that you do not have enough strength on your own, and you turn back to the God you wanted to curse a few minutes/days/months ago for “doing this to your child,” and you realize that it is ONLY by supernatural strength that you will be able to put one foot in front of the other and continue on.
You have a different relationship with God than you had before. One that includes yelling at Him, crying out to Him, begging Him for relief/healing/help, sitting in the windowsill of the hospital room and chatting with Him like He’s sitting there cross-legged on the other side of the windowsill. You may not make it to church, like ever, but you realize that church is a trauma room in the ER, it is in the back of an ambulance, it is in a vinyl chair that squeaks with every movement you make as you keep your eyes trained on a wavy line and the numbers it beeps back at you on a monitor at your baby’s bedside. Church is the friends who come bring you cokes and cake and toilet paper and lotion in the hospital, and fill your house with diapers and food and gift cards when you are home.
You will have a range of emotions far wider than you ever thought possible. You will watch friends have to pick out pint-sized caskets for their angels that leave this earth too soon and you will beg with every fiber of your being to God that you never have to make that choice. But you know, in some dark hidden place that you rarely go to in your soul, that you might. And you know that no matter what, you will be alright. You will watch those same friends handle the loss of their baby with such grace and strength, watch them as they rise from the ashes of broken dreams and broken hearts and see them say, “It is well with my soul,” and you will find within yourself the strength to keep going. Somehow, someway. Because if they can do it, you can do it. But this strength doesn’t come free.
You will exchange your carefree innocence for this strength. The part of you that used to get mad at people who cut you off in traffic, or rude salespersons, or the server at the restaurant who spills soda all over you—that part is gone. You realize that life is really too short. You realize you need to save your anger for the idiot know-it-all attending doctor who wants to change your child’s meds around willy-nilly. You need to save that feral strength of a momma bear to unleash on a doctor who won’t order pain meds when your child is clearly in pain. Your friends will still be walking around their normal lives talking about their new expensive shoes or the 792nd trip to Disneyland that they are planning and in your head you will be screaming—I would love to just not wear hospital socks with grippy bottoms and take a trip ANYWHERE but to the hospital—and you will realize that you are changed.
You will change. In many small ways, and in a few big ways too. They will be imperceptible to you at first. They sneak up on you, like the dark of night slowly creeps into a long summer evening. You will wake up one day, a few weeks or a few years into this new life you live as the mom of a baby with “medical complexities,” and realize that you CAN do this. You can do this no matter what.
You will feel pain that you have never thought possible, and you will feel joy that seems unreal. You will question every day if you can keep doing this. But then you will see your beautiful baby—you will not see the tubes and wires that come out of nearly every possible place on their little bodies. You will see their Daddy’s eyes, and your nose, and your mom’s hands. You will see them for their beauty, and their strength, and their amazingness. You will know that every minute is precious, even those minutes in the middle of the night when you are troubleshooting an IV pump that has a mind of its own, when you knock over the bag that contains body fluids and step in it (and oh by the way, you will learn that your gag reflex is much, much stronger than you ever thought it could be), when you are dealing with a nurse who is less than gentle when treating your fragile child.
All of these times are precious. Hold on to them. Don’t regret them. Never regret the choices you make, or the chance you took to give your child the best shot at life SHE could have.
You will be ok. In the end, everything will be alright.