An Ode to the Grandparents of Kids with Complex Medical Conditions

An Ode to the Grandparents of Kids with Complex Medical Conditions

To the grandparents of kids with complex medical conditions, and especially my kids’ grandparents:

I salute you.

I salute you, because there are not enough words or a combination of words to express how much we appreciate you. 

I salute you for going above and beyond the call of duty, each and every time we need it.

I never imagined parenthood would have such an abrupt and chaotic start, but you were by our sides every step of the way. You made it very clear that we didn’t have to do it alone.

You were there for Jack’s birth, even though he came nine weeks early via emergency C-section.

You were there when we learned of his first diagnoses, esophageal atresia and tracheoesophageal fistula.

You held our hands, cried and prayed with us when we heard that his liver was bleeding and he only had a 50% chance of surviving his first surgery on his first day of life. You bared the burden of double concern: concern for Jack and concern for your own children who were facing unfathomable fear and loss.

You sighed our same sighs of relief when he made it through.

When my husband, Dan, had to return to work, you came to the NICU with me every single day until he could join me at night. You gave me a sense of security and ability to leave the room to get something to eat.

You supported us when Jack had more tests done and he received additional diagnoses of choanal atresia, tethered spinal cord, bilateral grade 3 intraventricular hemorrhage in the brain and hypospadias.

When Jack was finally able to come home four months later to heal before his next surgical repairs, you took leave from your job to live with us for six weeks. He needed 24-hour monitoring. You often took the overnight shift to make sure that his replogle, the device that suctioned fluids out of his esophagus, was working properly. You took turns so that we could leave the room to eat, take breaks, and sleep. 

You were an extra set of hands when we needed to clean and change his feeding tube.

You made countless meals for us. You even ran errands. Mowed the grass. Cleaned. Our lives were able to continue because you were there to help keep it moving.

You sat in the waiting room with us for his next round of surgeries, and every one after that, for a total of eight major corrective surgeries and a myriad of scopes and MRIs.

Jack had bouts of vomiting after his esophageal repair and you helped clean it up numerous times without thinking twice about it.  

You attended doctor’s appointments with me when Dan couldn’t, because you knew how difficult it was to travel with all of that medical equipment.

When our daughter was born a few years later, you stayed with Jack so that Dan could be with me for her birth. There were very few people capable of caring for him, and because you were there, we were able to stay solely focused on Olive. 

Similarly, when Jack had any of his thrice-yearly bouts with pneumonia, you watched Olive. You came at any hour of the night so that we both could rush him to the ICU.

I salute you because there is no possible way that we could repay you for the gifts that you have given us. The gifts of your presence, comfort and love.

Jack, in part, is thriving today because you allowed us to be the best parents we could be. He didn’t need to go to another care facility in between his hospital admissions. He was able to stay at home and with people who love him. You understood how important this was to his health, growth and well-being.

Jack started kindergarten this year. On time. Because you were with us every step of the way, you understand how much of a miracle it is. You celebrate with us every “normal” milestone he reaches. You know that it’s no small feat given his prematurity and the sheer number of anomalies he was born with. He plays outside with his friends. He reads. He rides his bike. These are such typical things for typical kids to do and we count our blessings every day that he’s able to do to them, too.

The surgeries, scopes, appointments and admissions have slowed down, but you haven’t. You’re still by our sides, attending events like grandparents day, Olympic day, and birthdays. You celebrate in the normalcy just as much as we do.

Grandparents of kids with complex medical conditions, I salute you for being present for the good, the bad, the beautiful, the ugly and everything in between. You do it because you want to. You do it because you care. And you love our kids just like we do. I salute you because we would be lost without you.  

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Amanda Fusinato

About the Author: Amanda Fusinato

Amanda is a stay at home mother of two young children Jack (5) and Olive (1). She started a nonprofit called Team Jack to give back to Cincinnati Children's after Jack was born. It has since become her biggest passion along with helping other families who are going through similar struggles as they did when Jack was very sick. In her free time she loves spending time with her family and enjoying all the amazing restaurants this city has to offer.

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Comments

  1. Patty September 05, 21:49
    Such a beautiful tribute to those wonderful grandparents. Jack is a reflection of all of that love bestowed on him.
  2. Aunt Sally September 05, 22:37
    Amanda, this was so touching. You made me cry and that is no easy feat. Jack is a lucky little boy, he has wonderful parents and grandparents.