The Spectator

Written by: Robert

Stefanie asked me if I would be willing to write this post a little while back. I told her that

I was not. I am not a writer by any stretch of the imagination and putting my feelings

and thoughts on paper is an even further stretch. So, a special thanks to my bride who

put the idea of writing this in my head. Despite my best efforts I have not been able

to let it go. So, bare with me as I attempt to make this a coherent story.

I think every parent feels like a spectator with their kids. We watch these little humans

grow, see their personalities develop and see ourselves come out of them. However,

ever since our son Ben was born, I have told people that I felt like a spectator during the

pregnancy and birth process. Obviously, I had my part but in the grand scheme I think

most men would say that until the baby is born, we are support staff and the cheering

section. We are the ones running out at all hours with crazy drive through orders. We tried to come up with anything we can tell our ladies to help as they are really the ones

doing the work. We are Spectators.

When Ben was born, I was right there with a front row seat even though I was beyond

scared to be dad. I didn’t have the best father role model. I was scared I would be like

my father and not the father I wanted to be. I have worked very hard to be an active

father to my kids.

When our extra special Evie was born, I was scared again but in a very different way. I

was about to be a girl dad. After we found out she was a girl, I had a dream that I told

some teenage boy that I own a lot of guns and fly helicopters. He would never be found if he hurt my baby girl. Little did I know that those types of fears were going to be SO miniscule and distant to what lay ahead.

The day Evie was born we had to be at the hospital early for a planned C-section. My

best friend Ethan came over to the house to help get Ben to school for us. Off to the

hospital Stef and I went thinking a few hours later our perfectly healthy baby girl would

be with us. Ben would get to meet his long-awaited sister that afternoon. That was the

plan for the day, and I had zero reason to believe that the day would not go according to

plan.

Everything was going well. We got checked in, Stef was prepped, and

everything was on time as scheduled. When Evie came out, she was a lot bluer than

Ben was when he was born. The nurses worked on Evie for quite a while trying to get

her oxygen levels up. She started to pink up and I thought we were good to go. It

seemed like a blink of an eye later, but really a few hours had passed, when the doctor was

explaining that there was an aircraft on the way from Salt Lake to take Evie there for

possible emergency heart surgery. I could not believe what I was hearing. I was

supposed to be picking Ben up from school to bring him to meet his sister. I was not supposed to be waiting for an air evac team to arrive to take my baby girl to a hospital four hours away.

I went outside of the hospital to make some calls. I called Stef’s parents, my mom and

my sister to break the news. None of them lived close to us. They were all anxiously

awaiting my call to tell them Evie had arrived and that she and Stef were doing well.

Unfortunately, that was not the call they got. I told them that I needed all of them to get

on an airplane to come help. I went to pick up Ben so he could meet Evie prior to flight

crew arriving to pick her up.

The next piece of "great" news we got from the doctor was telling me that they needed

me to be in Salt Lake to sign any medical documents that were needed for the surgeries

Evie’s was more than likely going to need before the night was over. I will never forget

looking at Stef and Ben with Evie and seeing the fear on everyone’s face while we

waited for the aircraft to arrive. Stef and I decided that Ben would go up to Salt Lake

that night with me. He could not stay in the hospital with her and we did not feel right

making him stay with friends in the emotional state we were all in. I kept thinking to myself, how do you leave Stef my wife in a hospital by herself after major surgery, take her son and

drive four hours to a hospital to stand by while my baby girl goes through a surgery that

she may not come out of?

I was the spectator watching everything unfold in front of me with the power to affect none of it. Friends of ours came up to the hospital to be with Stef so she was not alone while Ben and I drove to Salt Lake. To the four of you that stayed with Stef that night: I am forever in your debt. I will never be able to express what it meant to me having you with her when I had to leave.

Fear was now my new best friend. Evie’s doctor was not very good at explaining Evie’s

situation to us. Although it was not good no matter how you put it, he made it seem a

lot more dire than her situation actually was. We did not learn this until after a

few days of being in the NICU. Evie was stable and did not need surgery after all.

Thank God for that.

The NICU docs started talking to us about her cardiac issues and how her Trisomy 21 was playing its part in her situation. They kept pointing out physical signs of her having Down Syndrome. I kept looking at her and I truly could not see what they were talking about. Honestly, even to this day I very rarely see it. I just see my perfect little girl. Up to this point in my life I have had no experience with homies with extra chromies.

The FEAR of this huge unknown monster was indescribable. This

was a monster that I, my baby girl's daddy, could not protect her from. Now I am asking

myself how do I sit back and watch this? What can I do? How is this happening? Back

to being the spectator and absolutely powerless!

One of my biggest fears outside of what was going on with Evie was how I was

going to explain what was going on to Ben. I didn’t understand it myself. How

was I going to explain Down Syndrome to a nine year old? I remember getting ready to

talk to Ben about her diagnosis and being so worried that I would not have any answers

to his questions. I started to google Down Syndrome to help find some answers for him

and for me. Do not ever do that to yourself. The article about Down Syndrome that

comes up first does not help suppress the fear of the future.

After all of my worrying, Ben’s response was absolutely beautiful. He told me that God knew he would be an extra special big brother, so He gave him and extra special baby sister.

That was all he needed to know. To this day that has not changed.

At this point Stef, her mom, my mom and my sister had all made it to the NICU. The

doctors there had started to paint a much clearer picture of Evie’s immediate situation.

We knew that she was going to need an extended stay in the NICU. Stef’s dad had

loaded up their travel trailer and was driving from Oklahoma to Utah prepared for them

to stay for as long as they were needed. We got Stef and her mom settled into a nearby

hotel and again I was faced with leaving my wife and daughter. We had no idea how

long Evie was going to be in hospital and Ben still had to go to school. So, Ben, my

mom, my sister and I headed back to our house four hours away. Just keep twisting the

knife in my heart, why don’t you?

The next few weeks were a blur. Stef’s dad arrived and we drove up to the hospital and

back home multiple times. For the most part I felt like I was holding it all together.

HAHAHAHAHA! Yeah, that was barley face value.

I could compartmentalize for the most part, but the smallest thing could let the fear monster rear its ugly head. I don’t think I have cried as much as I did in the first few weeks of

Evie’s life in my entire adult life.

The support we received from our family and our small group of true friends in Utah was unbelievable. Stef’s bosses and mine were absolutely incredible. There is no way we could have pulled through like we did without all of them.

Today there are still things about Evie’s medical future that worry me. Man, she came

with a huge learning curve. The biggest thing I have learned is Down Syndrome is not

this monster to be scared of. It is just part of who my baby girl is and so many other

people like her. She has taught me how to look at life from a very different perspective

than I did before. She is largely a typical two year old but she has this glow

that is infectious. She brings the best out of all of us.

I am learning to be okay as the spectator watching her grow up. That goes for her brother as well. I don’t like it but I am learning to be okay with it. I still have a long way to go before I am completely there. Not sure I will ever get there, but hey it's the journey that counts, right? I know Evie is going to teach us so much more along the way! I guess I better make some popcorn and enjoy the show!