I remember walking on the main floor at Phoenix Children's Hospital Friday. It usually has crowds of people bustling to and from the cafeteria. But in the stillness of 3:30 pm, I was suddenly very aware of God's love for me. That He knew where I'd been and stayed by my side through our days spent here. I am a mother. He is my Heavenly Father. When I work with Him, miracles happen.

Namely, we were discharged Friday!!

Bennett's Journey:

Saying goodbye. These were taken in pre-op, right before a nurse carried him to the OR.

I know I had help in this room. I was very aware of there being power beyond my own for brave smiles. It was a gift for my son. Looking at these pictures, I can still sense light and love in that room, but I still don't like remembering this part.

By Shannon Marquis

Darcy: "I don't think Bennett likes it here."

 

Day 2 in recovery! Happy Bennett flirting with lady nurses, hollering at male nurses, and making his monitors complain! Go Bennett, go Bennett!!

Darcy loved the wagon rides. Bennett's surgeon passed us in the hall right after this picture was taken and asked if Darcy could scoot over so he could ride too.

Mom and Darcy set out searching for the cookie cart guy.

Helping his echo tech. The day of discharge! Home again, home again, jiggity jig.

Things not captured on camera include the little cold Bennett caught the third day in the hospital, and every sneeze was followed by pained hollers :(
Lady nurses couldn't believe how sweet and "chill" Bennett was. Male nurses couldn't believe how much Bennett yelled at them :)
Steve's family visiting with dinners
Darcy getting wonderful playdates every day we were in the hospital
Dinners brought to our home every night from home teachers
A Harry and David fruit basket, juicy pears, popcorn, nuts, cheese and crackers from my brother's family
Steve had strep throat the entire week leading up to surgery. His doctor said it was the worst she'd ever seen. I didn't catch it!
Steve's sister flying to Arizona from California. She woke up at 4am to get to our house and be with Darcy. She did Darcy's hair in a Minnie Mouse bow. She said Darcy was an angel the whole day!!
Steve and I got to go on a date Monday before to see Lego Movie. I laughed the whole time.

And last but not least, Bennett has an aortic valve that pumps a healthy, steady flow of oxygen rich blood to his lower organs! Bennett knows warm toes! The kid's got heart.

Day 3

Bennett had heart surgery yesterday?! I'll take it.

Today the nurses had a friendly competition going concerning whose heart patient was "winning" in recovery. And the bounce-back baby trophy goes to....

I had it way too easy last night. I was bedding down on my couch, positioned right on the edge for a straight shot to Bennett's side. I anticipated being awake all night with my son and his pain.

But a combination of having an amazing nurse and exhaustion held me fast asleep most of the night!

Bennett was definitely more awake today. It was great that he wasn't crying with pain, but the way he stared and stared at me. No smiles, no reciprocation, just blank between blinks. I knew it translated as my time to shine. The way my mom always could when her children were down. I would be sunny and bright and sing-songy. Bound and determined to give him a room with a cheery view.

His first bottle was when I realized he'd had a furrowed brow, because as soon as the milk went to his lips, his countenance softened, and his forehead was smooth, erasing agitation. He would have a full tummy again!

Then I captured a video with some gurgles and a chuckle! Another five ounces down the hatch, and he looked like peace sleeping comfortably. When he woke up, he was kicking and talking! I got little smiles. Nurses came from across the hall to see the happy baby on day 2 of recovery! His monitors were blaring and protesting at all the rambunctious movement, so the nurses removed a few of them. "The monitors aren't made for kicking," said a nurse, freeing a wriggly foot from a pressure cuff.

I've found my voice when it comes to speaking up for my children. Bennett got rigid with pain, I told the nurses he needed more meds. I thought he looked uncomfortable on his side, laying on his incision, they gently rolled him over. Few things have boosted my confidence the way that did.

I've found that my Father in Heaven doesn't have to speak. He listens. All this time, I've felt heard. He let me go on and on. He heard it all. A sign of a truly remarkable parent, I think. Having that ability to listen to every corner and shadow on the path to feeling. I want to  exemplify that as a mom. I want to hear my children out. I want to be attuned to their emotions. I want to be fascinated by the lives they lead, and the thoughts they think. It is how I feel Heavenly Father is with mine.

Wednesday, June 11

^ this day has been on the brain for two months now. It seemed so blessedly far away.

It's been a good day. But first, my "hate-ables." A hyphenated word I've just conjured. I've decided to allow myself just a few each day. Acknowledge that some ugliness was there, then move on.

 First, the sterilizing wipes. We had an appointment last week to check that Bennett was healthy enough for heart surgery. While there, the nurse gave me detailed instructions of preparation and care. A bath the night before, last meal of breastmilk at 2:30 am, and sterilize his chest with special wipes. They look just like a small package of regular baby wipes. The nurse handed two packages over like a couple expired issues of National Geographic. I literally shuddered holding them in my hands. It was no longer indirect. I was aiding and abetting these people opening him up. I hated the wipes so much, Once at home, I immediately chucked them under the sink out of sight. Luckily I was looking for toiletries to pack the night before, or I would have forgotten them altogether.

Hospital smells. Call me a blue jay, but I prefer my young to smell like the nest. I don't like my precious baby smelling anything different from his own heavenly self.

The way he cries out in pain when he wakes up. The way beeping monitors accompany him because it means his blood pressure is going up. The way he seems to be looking in my eyes saying, "do something!" It reminds me a lot of my Monday night, when I was saying the same thing in a tearful prayer.

 Things went smoothly as soon as I was able to ignore a pounding heart like I'd never felt erupting in my chest. Fell asleep around 11, woke up at 2:30 to feed him the most humongous bottle of breastmilk ever (he wouldn't be eating for a few days). I just held him after that. I was grateful in that moment.

The smoothness continued for the morning while my husband held my hand on the drive to the hospital. We got into pre-op, and he got to pick a beanie baby! Those things still exist?? Phoenix children's investing in their future with beanie babies, just like 10-year-old me. He picked a bescaled, spiky lizard.

At this point, Bennett hasn't eaten in 6 hours. He typically demands 5 oz every two hours. But he never let on! He was a brave boy for mommy. He played with me an hour and a half in pre-op. I like to dangle blankies over him and softy sweep his frame, up and down. Then drop it on him, like a collapsing circus tent. I felt light and joy in those tender moments in that quiet room, just my baby and Steven. We sang songs, we laughed. We cried.

The procedure went well, and dr. velez  was "very happy" with the surgery and how Bennett was looking. He had warned us in pre-op about his aorta not being long enough to stretch across the removed narrowing, causing another coarctation, meaning another surgery in the future. But he said there had been plenty for him to work with when they got in the OR. I am grateful to know that he was an openly faithful man, and shared his feelings with us about the way God created the miraculous heart. I wonder if he felt all he many prayers offered for his hand to be guided.

Reformed Jack Sparrow. Our second nurse on the heart floor during our first day in recovery. I  dubbed him thusly and used the phrase to describe him to my sister-in-law who has spent many days on the heart floor with her daughter. She knew exactly who I was talking about!! Covered in tattoos, and waaay talkative. Great stories. I especially loved the one about trading the Black Pearl for a Prius :) don't tell him

His nurse now is heaven sent. I've been praying for help to get me through this first difficult night. She is assuring and reassuring every moment. Things like "that's totally normal," "he's so handsome!" and calling Bennett "Bubba" have this mama resting a little easier.

Darcy visited us. She was so sweet. She gave Bennett his lizard, something pretty uncharacteristic of her, when there are new stuffed animals. She didn't want to leave him behind.

There were little things. Maybe to some people, they wouldn't have made any difference. But little things that made me laugh today. A nurse mistaking Bennett for a girl, then saying, "oh, he's just so beautiful!" A brothers congratulatory text after surgery saying Bennett had a cool Ironman heart now. Reformed Jack Sparrow. Things that proved to me that Heavenly Father knows me perfectly, knew what I needed today: a tender, light heart facing a somber day. All these little thing made a big difference in my day.

A blog sojourn

My son will be in the operating room in 23 hours. I have felt the need to come here and record everything I can find in the experience this week that has shown how God's aware. I am not a blogger! But I need a brief outlet. I am finding quickly that this impending open heart surgery thing is trying to destroy me. So! Day one.

Tuesday, June 10

This morning, the day before Bennett's surgery, I knew I needed to count my blessings. There are so many. I am grateful for my precious children! I am forever grateful for their daily ability to cleanse and purge a stony heart. I like what Jim Gaffigan says about having children. Each one slowly chips away hardness from him, and softens his heart. So if he has a hundred kids, he just might turn into a good guy.

I am grateful for my husband.

I am grateful for our jobs.

I am grateful that we have nice cars with air conditioning! They make weathering the summer months more bearable. When we picked up my parents car they generously offered, I started crying on the drive back. I never thought I would have nice cars to drive.

I am grateful for my parents. I love their example of foregoing the next few years of ease and rest to serve valiantly as missionaries. I am grateful for their stories and journals.

I am so grateful to Steve's family, who are always supporting us. Steve's sister flew here from California last night just to help out!

I am grateful for my testimony. And I do have one. There have been a lot of frightening doubts and questions the last few weeks. Am I strong enough to do this? Will I have to be "so totally alone"? Does God even know where I am, and what's happening to me right now? ------>

Three days ago we were visited by a family who has gone through what we will experience, and more. They sat on our couch and handed us an envelope. There was $1,000 in it. Our jaws hit the floor. They told us they knew how scary it was to have a baby in the hospital. They told us they wanted continuous updates from the hospital. These are people in the middle of intense trials with their own precious little one's health! I am very grateful for their ability to be there for an anxious, sleepless family, and show so much love.

A sweet friend showed up one night with a single cinnamon roll on a solitary paper plate. It was for me only. She wanted to hear everything. What I was feeling, how I was standing there holding a newborn facing my future, what I would be needing, down to the very details of my life. I will never forget it. She had noted the day and time of our surgeon consult, and she called me before telling me she would be taking Darcy for the day. Mother Teresa came to my mind: Do small things with great love. Let no one ever come to you without leaving better and happier.

Who knew five older brothers would be such a comfort to the soul? One recent night I had a horrible nightmare, in which I was aware of the sound of incessant chainsaws. I didn't know where it was coming from. Suddenly I was standing in the OR with Bennett. It was such an awful nightmare.

Not long after, I got a voicemail from my big brother Sam. When we connected, I felt immediately at ease. He has that powerful impact on people. A contagious smile I could sense over the phone, and a laugh that scares away fear. I had another dream. Sam came to the hospital and took Darcy out to some batting cages and taught her how to hit. I woke up smiling, and was filled to the brim with  peace. I love all of my brothers, and their families. They have fasted and prayed for our family. They have called and texted. There is a lot of power in that.

Ahh. I feel better already. I also feel dumb for crying in front of my computer. This is not even everything I could list here in my first post.  I'm not really alone. Heavenly Father is aware of me. He knows my address, phone number, how many hairs are on my head! He knows my fears. He knows what I hope for--things no one else will ever know. I just can't stop praying. I won't stop praying.