First Heartiversary

To Our Strong Heart Warrior,

Happy First Heartiversary! On this day last year you had your first heart intervention. While in many ways that day was a blur, there are some things I’m not sure I’ll ever forget. 

I remember signing the consent form, for all the things that this intervention was to fix and for all the things that could go wrong.

I remember you were the third case of the day. So me and your dad got to spend the morning cuddling you and telling you how much we loved you. How strong you are. How you will come out of this better.

I remember who was there to provide us support physically and emotionally. We were showered with many wonderful family and friends who wore the shirt I designed in your support.

I remember walking you back to the O.R. You were already under some sedation. I remember me and dad kissing your forward before they wheeled you back.

I remember crying with dad. Hoping this first of many interventions was enough to get you in a better healthier spot. We held on to hope this would be what you needed to kick that breathing tube. And in your own Jocelyn fashion after a week they pulled that tube and you were successful at breathing on your own.

I remember seeing you after almost 7 hours of surgery still asleep with PICC lines and IV’s maxed out with medications to keep you stable, out of pain and heal.

I remember feeling a breath of relief when we talked to your surgeon, how pleased he was with you and how well he felt your recovery would be.

I remember sleeping on a tiny bed in the hospital with your dad and your sister safely sleeping next to the bed in a bassinet. That room was truly maxed out while me and dad took turns climbing over each other that night to check on you in the CICU. 

I remember the nurse that worked his tail off that night making sure he didn’t miss a beat with anything you would need. He really took amazing care of you.

   It’s definitely been a tough year and a half of your life. A constant battle from one thing to the next. Thankfully we have finally gotten to a time of calm. A time of stretched out doctor visits and less and less frequent visits to the hospital. It’s amazing to look back and see our journey as a family. How far we have come and how in our bleakest of times you showed every doctor you were more than their expectations. After your first code in the NICU they told me and Matt how unsure of your chances at life were. How there weren’t very many children at all like her, therefore they advised us to expect the worst. I even had a nurse tell me, “It’s easy to be a baby.” and for those that were as confused as I was at those words. She was basically telling me growing up and developing like most children was something she most likely was never going to be capable of. Harsh right. Well she was wrong. We gave you every opportunity to prove people wrong and kiddo you always rose to the challenge.

At this point we vowed as parents to give you every opportunity to prove people wrong. To show this world you will always be more than your scars. We will always be here to support you, and let you accomplish your goals anyway you see fit, true Jocelyn style. Keep showing this world your strength Jojo bean.

Love Always, 

Mom and Dad