Make Your Story Meaningful

This is a very personal, yet very necessary post to add to the blog today. Like so many of you, we've had a crazy rollercoaster of events and emotions to process. Have you ever walked gotten of of a rollercoaster and felt disoriented? Not sure which way is up or what you just went through? That's pretty much how our family feels right now. Not to say the ride is over. We're still at the amusement park and there are more rides to be had. But feeling pretty proud of being brave enough for the ride the past two years and I'm here to encourage you through our sweet story. 

Photo cred: Nesting Tree Photography

nicu arlo.jpg

There are so many events in life that are out of your control. Yes, you can work hard and adapt and make changes. However, if you're following this blog, then I have reason to believe that there have been decisions or surgeries or instances your child or family has endured that have left you no choice but to buckle your seatbelt and hold on tight. Many times over the past couple years, I've felt that I'm just 'along for the ride.' There are wonderful lessons and moments of triumph to take away from every story, but this post is about how we've tried to make our child's story meaningful and one worth retelling years down the road. I realize that this post is a big part in my own healing but I hope that it finds you as a way to help you do the same, and find the beauty in the healing process.

My son is still just one year old and I know (especially with the doses of versid he's received to block memory on surgery days) that he'll have a hard time recalling these events that are changing the shape of his body and his story alike. He's been given many chances to show courage and strength and although these (almost) 2 years have been difficult for him and our family, this is a huge part of who we are and I want to praise him for this time instead of subconsciously blocking it out.

Arlo was born with EA/TEF (and more and more and more) and was unable to swallow. He was rushed to Children's Hospital after an emergency cesarean and received his first major EA/TEF repair surgery at just 4 days old. His esophagus, instead of being a tunnel of muscular tissue to swallow with was only just a one inch pouch. To top it off, since his esophagus would move and stretch afterwards with the slightest movement of his little chin, they had to keep him sedated for several days after to keep him from moving.  This was his first time being put under and what we didn't know was that it was the first of many surgeries to help him swallow and breathe and therefore, grow.  After a traumatic delivery experience in addition to my own healing just days after delivering him, you can imagine this was a difficult process to go through for not just him but our family as well. 

Among prayers, and support from friends and family, there was one song that kept finding us on this particular day. Lost Boy by Ruth B. I remember staring at the moon in the sky listening to it while Arlo was under anesthesia and worrying more than I've ever worried before. Would the surgery work? Would it cause more damage? What does a 4 day old dream about when they're put out for days on end? Is he in pain? And the list went on...

All we could tell ourselves was that he was "off in Neverland" and probably having the time of his life flying around with Peter Pan and the Lost Boys. Little did we know he'd go under anesthesia (or trips to Neverland) 22 more times within the next year.  Lyrics from this song and little pieces of this 'Neverland theory' have followed us along the way and helped us cope as supportive parents. Focusing on these little connections or signs have helped us find comfort on the tough days and allowed us to string them all together like pages of a story. We know this song, the meaning in it for our family, and all the little tokens along the way have been very helpful in our dealing with this difficult time and believing it all is part of his story as it was meant to be. 

Here are a few of Arlo's Souveniers from Neverland. Some have been planned. Some have helped us heal emotionally. Some have surprised us along the way. We're bottling them all up and proud of his progress on the long journey of growth.

Ruth B.'s Lost Boy

Do yourself a favor and spend 5 minutes listening. This song will ALWAYS have a very special place in our hearts. This is my favorite version of the song. 

Lost Boy Light

My only friend was the man in the moon and even sometimes he would go away, too. Then one night as I closed my eyes, I saw a shadow flying high. He came to me with the sweetest smile, told me he wanted to talk to for awhile. He said, "Peter Pan, That's what they call me. I promise that you'll never be lonely."


Halloween Costumes

I love making costumes for my boys and big brother Mason was so happy to wear a costume that was tucked away in his great grandmother's collection. My Peter Pan and Lost Boy were too cute for words.

halloween pic 4.png

Family Game Night

This puzzle shares some of our favorite lyrics and the connection between Peter Pan curing the loneliness of the Lost Boy is ever so true with these brothers as well.


Hospital Murals

Just when my mind starts telling me the day is slowly sliding downhill, I look for signs of positivity. Walking into a hospital room with this painted on the wall was such a sweet surprise. This has happened more than once in different clinics!


Seeing the Signs

This one I owe to my four year old. He loves looking for shadows and always thinks Peter Pan is following us. He saw ours one sunny day and shouted, "Mom, look, his shadow flying high!" This was one of the first times I realized we may be OVER listening to the song at the point. Arlo's NICU nurse can agree on this one as well... Apologies to Nurse Stephanie (who we secretly called Arlo's Tinker Bell).


The Power of Music

I swear we snagged this free piano and painted it (thanks to one strong willed hubby) just for the purpose of tinkering around and learning to play 'our song.' It is up in our loft, which is hugged by both boys' rooms. I play when they play. Sometimes I play to calm them down before bed. The power of music is a strong one when it comes to healing and we are living proof of that. 

Really putting myself out there with this one... The piano is out of tune. So am I. My hair is thrown into a messy braid, my duet partner joined me unexpectedly and I'm wildly uncomfortable hearing myself on camera. Guess what? I'm posting it anyways because it's all about the journey. The process. The healing. You can even turn your sound off if you like, but I promise you'll get to see my sweet tubie sing with me at the end. 


This is all here to encourage you to find little tokens of strength. Look for signs. Stay positive. If you're in the thick of the unknown or your child is recovering or sick or even if you're feeling lost in the feeding battle just know EVERY piece is needed to make up the big puzzle. They are all worth celebrating and remaining part of your story to tell. Make it a meaningful one.

Emily Jasinowski