waking up with a roar – sort of

*

The nurse wants to chat as we walk through the labyrinth of hallways to the children’s recovery ward.

I don’t.

I do my best to make sounds that I think are appropriate as she rattles on. Periodic Mmm-Hmm’s and Uh-huh’s seem to satisfy her. Anything to keep her moving forward.

For God’s Sake, woman, HURRY!

As we approach recovery I see Brooke almost immediately. She is still out. A nurse is tending to an IV bag behind her and above her head.

That IV is attached to her somewhere. First thing she’s going to do is try to pull that thing out. She can’t see the nurse. No one behind her when she wakes up.

She looks awful. There is blood smeared across her cheek. Her chest heaves up and down as she sleeps. I reach out to touch her, but hesitate. I gently push her hair away from her face.

It’s 2001. Katie is just minutes old. I caress her face with the back of my fingertips. I don’t even realize yet that I’m afraid to use my whole hand. She is so tiny. So delicate. I am desperately afraid that I will break her.

I put my hand on Brooke’s head. She doesn’t move. I take a deep breath.

This is my girl. She’s stronger than anyone I know. She ain’t gonna break.

I stroke her hair as I ask the nurse to explain what’s going on.

Luau comes running in, Cheez-Its in hand. They were the only thing Brooke asked for all morning. They will be there for her when she’s ready.

I lean in over my baby and nuzzle her neck. The smell of the plastic from the oxygen mask is overwhelming. I stifle nausea.

My girl didn’t pluck her sensory issues from thin air.

But sitting by the side of her bed won’t be enough when she wakes up. She needs to KNOW that I am there. I put my cheek against hers and begin to sing softly in her ear.

Earlier that morning, we’d been singing the thinking song from Blue’s Clues. It made her happy every time. We’d sung it in the car on the way to the hospital. We’d sung it while sitting on the floor in the hallway outside reception before they opened. We’d sung it as we walked along the corridor from one holding area to the next.

Sit down in our thinking chair and think… think… thi-i-ink!
Cause when we use our minds; take a step at a time,
We can do anything … that we wanna do!

And each time, she’d ended it with a roar. Well, not really a roar, per se, but the word, ‘Roar’. It seems there was an episode in which Blue was pretending to be a lion. At the end of the song she said, “Roar.” At least I think that’s the story. Either way, we sang the song, she said, “Roar” at the end. You’re with me, right?

So there I am, singing Blue’s Clues to my sleeping Brooke, waiting and hoping that somehow, in some silly way, the song will help offer the same comfort that it had earlier in the morning. Something scripted, something familiar, something predictable in a world that is currently anything but.

And so I sing.

Sit down in our thinking chair and think… think… thi-i-ink!
Cause when we use our minds; take a step at a time,
We can do anything … that we wanna do!

As I finish, Little Miss opens her eyes and says, “Roar.”

Nurse Kathy turns around. “Did she just roar?”

Luau and I giggle.

And then she tries to tear out the IV.

Nurse Kathy quickly wraps her arm in a sleeve. Brooke is moving slowly. She doesn’t have it in her to fight. She closes her eyes and she’s out again.

We will repeat this process for the next two hours – rouse, struggle, sleep.

An infant is moved into the bed across the way. She is crying. Brooke sort of screams in response, but her voice is not hers. The noise that comes out is hoarse, scratchy, awful. Kathy looks her up and down trying to figure out what’s causing her distress.

Luau and I explain that it’s not physical – it’s the baby crying. We scramble to get the Teletubbies DVD up and running again. We hand her the player, this time with headphones. By the time she gets them on she is asleep again. But still, she mumbles her responses to the video. She ALWAYS repeats “Tubby Custard.” She ALWAYS follows the oboe sound with, “Po farted!”. She ALWAYS asks what they’re doing when they fall down. Even in her sleep, she adheres to the script. It’s hilarious and adorable and heartbreaking.

Nurse Kathy tells me that we’re getting a new friend in the next berth. As they wheel him in, our anesthesiologist looks over and thanks me. I’m confused. “You were a huge help in there, Mom,” she says. “Thank you.”

I stutter through a response. “Thank YOU all so much for your flexibility.” I say. “It made all the difference.”

The head nurse comes by. I say the same thing to her. She shrugs and heads off to her next patient.

The anesthesiologist is briefing Kathy on the little boy next door. She says, “Parents are very calm and supportive. Seem really normal.”

Oh dear Lord, what the hell did they tell her about me?

This lady has ISSUES. Nearly broke down the door trying to get to her kid. Brace yourself; this is gonna be a doozy.

I come really close to asking, but decide I don’t really want to know.

By 10:30, Kathy has taken to calling Brooke Sleeping Beauty. She lets us know that our stay at Hotel Children’s is over. After five hours in this place, I’m happy to get a move on, but I’m not convinced that Brooke’s going to get up. Kathy knows her stuff.

“Hey, my friend,” she says to Sleeping Beauty. “You want to go home?”

Brooke opens her eyes long enough to say, “Uh huh.”

As we start to pack up, Nurse Kathy asks Brooke if she’d like to keep the hospital issue slipper-socks that she wore through surgery. Brooke wiggles her feet, processes the question and says, “How about a no?” I fall in love with this child a thousand times a day.

She’s drifted off again, curled into me after changing back into her clothes. Kathy asks if I’d like to carry her or if we’d prefer a wheelchair with her on my lap. I tell her that I’m fine carrying her, but little Miss, sleeping or not, has another plan. A tiny voice emerges from my chest. “Wheelchair!”

She’s adamant about taking the wheelchair, so we do.

We leave the hospital and head out to the car with the bravest little girl I know, less four teeth. She is shivering and upset as I put her into the car, but she’ll make it through just fine. She’ll run a 103 fever later in the day and scare the stuffing out of both of her parents, but it will turn out to be nothing. She will ask the tooth fairy for things that she can’t possibly find on short notice, but she’ll be OK when said fairy delivers a soft stuffed bunny instead.

And through it all she will prove – yet again – that there is absolutely nothing in this world that she cannot do.

*

Thank you so much to all of you who offered up your own experiences, advice, love, support and prayers. A special thanks to my PJs and particularly to my friend, Mom-NOS who was subjected to a series of knock-knock jokes and nonsense texts at 6am – I swear I thought she was texting Luau. And no, I’m not sure why knock knock / who’s there / damoon / damoon who / damoon is eating snotty balls is funny, but let me tell you, it helped us get through some serious stuff, so thank you. :)

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20 thoughts on “waking up with a roar – sort of

  1. She may get her sensory stuff from you, but she also got your strength and your beautiful soul. You did great. She did great.
    (and is it bad that I think that joke is funny? I bet mom-nos did too…)

  2. She seems more like her mama everyday. She is strong, smart and, deliberate, (did I say smart?) because she is all that and more.
    Love you all,
    Dad

  3. She is strong and fierce, just like her mama. And no, we don’t need to know what they think of us, if we are “normal” or not, because in the end, we know best and we are not afraid to speak up for our babies. One of the many ways our lives are forever changed. We don’t need to know anymore, because it doesn’t matter. So glad that everything turned out okay for little miss and that you can put this one firmly behind you. xo

  4. It was wonderful to read your experience. I had a similar one last year when our little Veronica 3 at the time had her tonsils & adenoids removed. It was a scary situation and an overnite stay but we got through it pretty good. I’m so happy to hear that all ended well. Your baby is a fighter and trooper, she’ll be just fine and she obviously has the best support group! Sending happy thoughts and blessings to your family.

  5. This is what DOAM is all about; a “how to” lesson for our extended “family” and hope. There are so many things I would never think of that you teach me through all your experiences. Thank you, Jess! You are on my list of people to be thankful for this year! gail

  6. As I read this, I am sitting in a Children’s Hospital waiting room waiting for my baby girl to finish up her testing under general anesthesia. Thank you so much for sharing this. It makes me feel a little less alone today, while i wait for them to come get me before she wakes up. You and your family are such an inspiration. I’m glad Brooke is doing well. Thanks again!

  7. Reading this brought back a lot of memories. My ASD kid also has a heart defect and managed to break his elbow bad enough it required surgery. So, yeah. We’ve dealt with a lot of hospital personnel. For every person who insisted on doing things the way they’ve always done them, we’ve had people who are willing to listen and go with my suggestions/requests. I’m so glad that the main nursing staff and surgical staff understood and honored your requests. We don’t make them lightly.

    The Blues Clues song made me laugh. When K was little I had a song that I made up that spelled out his name. During one of his procedures I was singing it to him and the nurse said “I wish I had my own theme song”. Yeah. She was one of the good ones.

  8. I giggled when I read the part where you almost ask the staff what they said about you. My own daughter has had a number of day surgeries so I completely sympathize with the fear and anxiety you were experiencing. Being a pediatric nurse I am both curious and reluctant to know what is said about me by the day surgery staff. I’m sure I’ve been labelled “difficult” by some, “knowledgeable” by others, and “crazy” by a few!

  9. I love everything about this. So proud of Brooke. So happy everything was ok. Glad you and Luau managed to get through it too. Sounds like every one was stellar. xo

  10. What a beautiful story….as I have many similar ones. As I have said before I have twin daughters with cerebral palsy, one daughter has had 13 surgeries and the other has had four, so I know you will do anything to keep your sanity through it all. Amazingly enough these kids are so much stronger than we are at times. I remember on particular surgery, it was a tough one it was a very serious spinal fusion. I cried in the waiting room for hours. I just could not stop.Actually to the point where I thought I was really loosing it. I think it was in all reality just many years of back and forth there that finally came spilling out. When my beautiful daughter woke up I was standing next to her stroking her forehead and kissing her cheek, she opened her eyes for a brief minute, she was in terrible pain, but she managed to say “mamma it is OK I am fine, it hurts but I know you won’t leave me, please mamma don’t cry,I am a big girl!!” She continued to drift off and on to sleep. How is it that our children know how to comfort us when we are supposed to do all the comforting and reassuring. After some time had passed I had told the story to many friends and family who agreed what a special little girl Ricki-Lee is, and how she has the ability to fill a heart with just one word. Then one day about a year later I was sharing the story with someone, and they replied with she had a great teacher!!

    No matter what we as parents of children with special needs do, we are always setting the example for our kids, if we handle the difficulties and challenges positively then more then likely they will catch on as well.

    God bless us all!!

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