I was overwhelmed at the response to last week’s emotional outpouring of my thoughts regarding being/becoming a mom to a child with special needs. It felt cathartic to write some of that stuff – stuff that I usually keep stuffed in, but comes out occasionally. I decided maybe I should try to get some more of it out. If it helps other moms in their journey, then I WANT to get it out. I’ve “met” some amazing new people this week because of that post, and I hope that those friendships continue to develop, that that post continues to touch people’s hearts. So here you go – more of the stuff I stuff inside. As one of those friends goes in for some pretty major surgery this week, I thought I’d talk a little about what you will learn when your baby goes to surgery.
You think you know what it’s like, because you have seen it on TV before.
Or because you have handed your baby off for a 20 minute procedure involving putting teeny tubes in their ears.
Or because your cousin’s babysitter’s dog-walker’s son once had to have surgery and you heard all about that.
But nothing will prepare you for the first time (or any time) you have to hand off your baby to a team of gowned up doctors and nurses and go wait in “family surgery waiting area”.
Here is what you will need to know:
You will not be able to sign the consent forms. You know how to write your name, and you can see 
the line on the paper, and your hand FEELs like it should be responding to the command to “sign here please”…but it won’t. You will see the surgery listed out in cold medical terms at the top of the sheet, and the cute little teenager who claims to be a “resident doctor” is telling you that it just details what is going on and some of the common risks and they need you to sign it as consent and permission to perform that surgery – but still, your hand won’t work. You cannot do it. You will have a mental block against being the one who signs the paper that made it ok to make a hole in your baby’s stomach/chest/neck/head. You will not be able to be the one who says – yes, it is ok for you to put my baby through all of this pain while I sit out here thinking of anything else but what is going on in there. Your husband will notice the drops of your tears on the paper and your hand shaking above that paper and he will take it from you and sign his name instead. He will know without you saying that no matter what that paper ever says, you are unable to sign it.
You will learn that nothing is ever set in stone until the anesthesiologist comes in. You will learn that these smartest of the smart doctors are the ones who REALLY hold your child’s life in their hands. You will learn that they speak a whole other language from what the surgeon speaks, and you will have to learn this language. It involves a lot of big words like “malignant hyperthermia” and “sevoflurane”, and one day you will actually find yourself having a conversation with an anesthesiologist regarding the use of “TIVA vs propofol for induction” and you will wonder what happened to your real life. You beg and hope and plead that this doctor and his team really does know the best mixture of medications for your child whose body likes to do crazy things when its under GA (general anesthesia), but ultimately, you will learn that you have to trust. Just trust. You will also learn that nobody believes you about your child’s extreme tolerance of the “happy juice” medicine until they are muttering under their breaths about how this is enough to make a horse fall over giggling pushing in their fifth vial of medicine and you will have a brief moment of smugness at knowing more than an anesthesiologist.
You will learn that you don’t really want to walk back to the OR with your baby. It is better to leave them waving happily in the crib while the nurses wheel her down the hallway. You will walk out that door with a firm determination to not look back and to not let the tears fall, not yet, because you will not leave her with a view of a crying mommy. You will be strong. You will force your brain to think about food because you will have likely been “NPO” (nothing to eat) along with your child, and you have 4 texts on your phone asking if you’ve eaten yet (from your mother who will always be your mother and worried about you eating, and from your friends who know your routine) and your husband (if he is there, cause sometimes he can’t be) – but still you hear the voices telling you to go eat. So you do. Because you know you will be in a bad place without something in your stomach, and because it kills some time that you don’t have to be in “family surgical waiting area”.
You will go and get your food and you will bring it back to the area they have set aside for the families waiting for their children in surgery. You will realize this area is it’s own little microcosm of society. Strange things happen in that waiting area. People wait. And waiting does weird things to people. People get good news and people get bad news and their reactions are palpable. Some people bring in entire camps of people to wait with them. And others huddle in their coats not wanting to talk to or look at anyone else. Some people raid the vending machines like a zombie apocalypse has just occurred and you will want to yell at them because they took the last five packs of plain m&m’s and all you really effin wanted was a pack of stupid plain m&m’s. Some people feel the need to call every. single. person. in their contact list and loudly explain to them every. single. detail. of what their child’s surgery is going to entail. You will learn to spot those people from a mile away and set up your own camp far far away. you will also learn to bring headphones to block out this information.
You will learn that you can pack a hundred million jillion things to do to entertain yourself or occupy your mind but you will not be able to focus on a thing. your brain will still be stuck willing the anesthesiologist to please do a good job and praying with every fiber of your being for the surgeon to do a good job and for your baby to be sleeping peacefully and having good drug induced dreams. People will text you and want updates and you won’t have any info to update them with and you will feel like throwing your phone against the wall because you’d like an effing update too but the nurse hasn’t called your name yet. your really good friends will know that you want to have funny stories texted to you during the wait and you will also get random insane texts from your random insane friends, and you will crack a smile, not so much at their goofy jokes, but at the fact that your friends know you and love you and know what you need.
you will learn that the surgeon will give you an estimate of time not unlike the cable guy. “It should take me between 45 minutes and 4 hours to complete my work, and then of course getting her woken up and settled in the PACU.” And you want to ask if he can estimate any closer between that range, but you know it’s futile anyways because your child ROUTINELY will take double whatever time they estimate. It’s just who she is.
You will learn that you hate knowing which chairs are the best in this family waiting room. No one should spend enough time in the family surgical waiting area to have a “favorite” chair/couch/tv. You will again wonder how you ended up here. And you will have to go play a stupid game like “angry birds” in order to get your brain off that crazy track of thinking. And you will find yourself unnervingly frustrated at the stupid pigs in the game that just won’t be crushed by the stupid falling logs. You won’t talk a whole lot in the waiting area. Even if you have someone with you, which isn’t always, you won’t feel like talking. in the same way that your hand stopped working while trying to sign the papers, your mouth feels like it won’t work. Or if it does that only swear words will come out. so you keep it shut.
And you will learn that JUST when you start to feel desperate for information, that is when they will call you “parents of Kendall….. parents of Kendall…the doctor will see you in consultation B”. And you will breathe a huge sigh of relief and run to the consultation room to hear how your child has done.
She is ok, it all went ok. You breathe again. You cannot wait to see her again. You scrub your hands with the antibacterial sanitizer and you go to the pacu area and you can hear her/smell her/sense her from the doorway before the nurse has even pointed you in the right direction and you are there, at her bedside, holding her hand, letting the tears come finally because she’s all done and she’s in pain and she can’t even open her eyes against all that her little body is fighting and you want to scoop her up and hold her but you know that would be more painful and so you let her sleep and you put your face next to hers and tell her “mommy’s here i’m right here you did such a good job baby girl mommy loves you”.
and her fingers will curl around yours like they have done since she was first born and she will know you are there and she will relax because she knows that if you are there then everything will be ok. And you promise her that you will make it all be ok because you are her mommy and that is your job.
and that is what you will learn about surgery.
You will be ok through this though. Because you always are.
No major holes here. I agree about never doing anything you bring with you. I stopped packing bags years ago, though I still need one thing to blankly stare at. No matter how many “good” experiences, you still think of the one really bad experience, just a tiny bit, and it ruins your delusions. I also can never escape the rage I feel when I realize that I am discussing her “normal” waking up behavior. Why is this normal?????????? Why are the nurses looking annoyed that she is screaming, like it is just on purpose?
I avoid people in the waiting area. I hate the large groups. I am always alone. I hate the phone talkers and the people who are crying over the little tubes. It is an ugly place. What will I do if I ever have to have major holes put in?
I think you will handle major holes the same way you’ve handled major burns. It’s all the same at the end of the day, really. You, of all people that I personally know, truly understand the horridness of the anesthesia discussions/handoff. And you handle it amazingly every time. Cause that’s just what moms do, when they have to. That’s the point of my post. It’s horrible and ugly and crappy, but at the end of the day, you just roll with it in your own way, cause you do what you gotta do for your kid. You do it through the prayers and support of others, you do it by the grace of God, you do it out of some random inborn sense of survival instinct that moms of special kids get blessed with. I’m sorry Ava is a waking screamer. i wish some doc would figure out a way to help her not wake up so badly every time.
It is weird, she had stopped screaming for about a year and now is back at it.
I don’t want to hate the other people. I just do. I don’t the rest of the time, just in the moment.
I would like to ADD: I have had to advise to my husband to be compassionate for others in the cafe, elevator, restrooms, hallways if they seem rude or look angry, etc. We are ALL there worrying about our children. We do not know what news that they may have just heard or what their story is…maybe it WORSE than your child’s case, maybe terminal, or maybe it is just their 1st time spending their child back for surgery ( even if it is just for tiny tubes ). Surgery is SCARY and I feel that same awful feeling in the pit of my stomach everytime I am in the waiting room waiting for my child or my niece, or my friend’s child.
That’s very true Vicki. And really – I wasn’t trying to minimize anyone’s experience. I realize that to many many many of my friends, that Kendall’s surgeries are considered minor. For me they were not, but for others they are. Just as tube surgery is major to a lot of people. We all can only handle what we can handle. I’m referring only to what goes on in MY heart/head when i’m waiting here. But it has really opened my eyes to the fact that everyone is freaked out in their own way, over their own child’s issues. Waiting rooms are just horrible places. My heart goes out to anyone and everyone who has ever had to sit in one for any amount of time, for any reason.
Every body’s pain and stress is real. Just sometimes you forget about that fact.
Does Kendall like Phineas & Ferb on Disney Channel? If so, there’s a game on the ipad (I assume that’s the “crack-pad”) called Where’s My Perry? which, if you’ve ever played any of the “Where’s my Water?” games, that’s what it’s based on, except you send Agent P down his tunnels so he can get to HQ. It’s kinda hard but a ton better than Frustrating Pigs (Angry Birds).
What a difficult thing to have to deal with.
I haven’t had anything quite like that with my kids, but we’ve had other moments- moments when I just wanted them to be okay, but couldn’t do anything but wait. And sometimes have to listen to them cry while I wasn’t able to fix anything.
I wish that no parent ever had to know this kind of fear.
Such a brave and strong post. xo
Thanks Shell~ I appreciate you stopping by and commenting! All mommy-heart-breaking moments are so tough. But they make the good times even that much better!
I can’t imagine what all of that must be like. Of course, I can relate to something being wrong and feeling like you should be able to fix it, but can’t (what parent can’t relate to that aspect), but I have never experienced anything like what you ladies have gone through. I can’t help but admire the strength and courage it must take to have to go through something like that. Mommies are strong because they have to be, but there are some things that no parent should ever have to do.
Thank you for sharing something so personal. I’m sure it’s not an easy thing to put out there, but you do so with strength and grace.
Thank you so much for stopping by Crystal and for sharing your thoughts~ your words mean a lot to me!
Terra, you made me cry! Could have written a lot of that myself, but that last paragraph is so true for us.
Thank you for sharing with us.
Thanks Donna~ Sorry for the crying!