Following the leader

Not even an hour after Jack was born, the nurse put him on my chest and walked out the door. I remember I felt a little panic when she shut the door behind her. She didn’t come back and say, “Sorry, I didn’t mean to close that. We will keep a watch on you guys and make sure everything is going okay in here,” like I expected her to do. Ben and I were the only adults left in the room. No one left a manual or had given us instructions on what to do. It was all up to us.

We were so blissfully naïve the first night. I couldn’t get out of bed yet, so Ben swaddled Jack and put him in the clear bassinet next to my bed so I could watch him. He turned off the lights and we settled in for our first night together as a family of three. It wasn’t long before that little guy started to cry and the once confident new parents again had no idea what to do. 

That first night turned into two nights and then a week. With each passing day, we were finding our footing as parents and learning more and more about our little boy. He started going to school two days a week when he was about 18 months old. I filled out forms about his preferences and his schedule. It was a way for the teacher to better understand our son the way we understood him.

“Tell me about Ellie. What does she like to do? How can we comfort her?” Ellie’s teacher asked before she started her school. I didn’t have an answer.  She was five months old but had only lived at home with us for about six weeks. I was struggling with feeling connected to her. She looked at me the same way she looked at nurses at the hospital. She smiled for strangers, but not for me.

As we are getting ready to celebrate her first birthday next week, I can’t help but reflect on all of the people that have had a hand in helping us get to this point. There are so many to thank, but it feels like thank you would never be enough. This army of people all came into our lives at just the right time. From the doctors and the nurses to the therapists, teachers and trailblazers who came before us, these people who were strangers are now lifelines that have gotten us to where we are today.

In a way, even though she is very dependent on Ben, me and others to keep her alive, I think of her as more independent than Jack. Within the first few minutes of her life, she left her parents and went out into the great big world alone. She has been places that we have never been and aren’t allowed to go. She looked for comfort in eyes on faces that were covered with masks too many times for me to think about because it makes my heart break to think about how scary that must have been. She met hundreds of people within the first six months of her life who all played some part in her life.  

She works so very hard every day to grow using her own will and motivation. She wants to be in the middle of everything and wants to go just like her brother. She has this inherent drive to make anything happen that is hard for me to explain. She is so brave. So much braver than I can comprehend.

It seems a lot different with Jack. He was born and he was given to us. We took him home and kept logs of how much milk he was ingesting and how many wet diapers he had each day. Ben and I debated increasing the volume of milk he would receive and when we would switch him over to formula. We figured out how many hours he needed to sleep and got him on a schedule. We managed fevers and runny noses. We watched as he figured out how to crawl then stand and then walk on his own. We learned his language and could communicate. Sure, his pediatrician and our families helped, but at the end of the day, he was at home with the two of us and we were a family.

So much of Ellie is up for debate and the experts are the ones with the answers. Some days, the expert is a cardiologist. Some days, the expert is a mom who has been in our shoes before. Some days, the expert is an x-ray. I hardly ever feel like Ben or I are the experts. We are continuously learning about how to take care of her every day. It is hard for me to not be the Ellie Expert. She is mine. I should know everything about her, just like I know so much about Jack.

The other day, we were walking to his grandmother’s house and Jack was playing a game where he would run ahead and yell back to me that he was the leader and I needed to say behind him. The more I thought about it, the more I heard a lesson about Ellie. She is the leader. We need to say behind her. She needs all of us to get where she is going, but we are just there for support to make sure she stays safe. She gets to go first and she will show us the way to give her what she needs.

She spent over 150 nights in the hospital over the last year. Over those days and nights, she assembled a support system that she will always have to help her move forward. During the other 200 or so days she was out of the hospital, she developed relationships with so many people who stand behind her and push her to set and achieve goals. She is proof positive that it takes a village to raise a child. When I think about all of the people who have held her hand, I don’t feel sad anymore about our rocky start. I feel so thankful for this enormous gift that so many have given us. We are all stronger because of Ellie’s village.

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