“Walk down this hall, then take a left and take the Frog elevator up to 7. Take a right and take the Bear elevator up to 8, and you’ll get to where you need to go.” Akiva and I said thank you and started wheeling Idan down the hall.
Vibrant colors and shapes lined the hallways, and Idan leaned forward in his stroller and pointed to each, remarking “a-duh!” at the pictures. Akiva and I smiled down at him, sharing in his wonder.
When we got to the 8th floor, we were quickly reminded of why we were here. Children with bald little heads, faces puffy from steroids, and tubes taped from their nose around their face, played and ran around the floor. We checked in for Idan’s echocardiogram and EKG tests – two of the many tests that would be performed before his bone marrow transplant – and sat down, knowing that Idan would one day be just like these children. Nothing can really prepare you as a parent for that feeling when you know your child is sick.
That thought sometimes haunts me – my child is sick. I remember when Idan was six months old, sitting in a waiting room at a hematology clinic to get Idan tested for a bleeding disorder. When he was only a few days old, he had trouble healing after a small cut. Nothing life-threatening of course, but it was enough to raise our pediatrician’s eyebrow and say, why don’t you go to a hematologist when he’s a bit older to rule anything out? I remember sitting there that day, embarrassed and uncomfortable. Here I was, a mom to a beautiful blabbering and healthy little boy, sitting amongst parents with really sick children. I felt guilty for sitting there, and guilty for taking up a seat. My son was fine.
Two months later, we again brought a beautiful blabbering and healthy little boy into another hospital waiting room – this time the ER. He was breathing quickly, but otherwise seemed fine. We were brought directly into an examination room, and were sitting around waiting for a doctor to examine Idan, when a lovely young lady came to the room holding a quilt and pillow made by schoolchildren for sick kids. I felt guilty for sitting there, and silly for accepting that thoughtful but unnecessary gift. My son was fine.
Since then, we’ve discovered that Idan is not fine. In fact, he is quite sick, and requires an invasive, risky, and prolonged procedure to save his life. My son is sick. And since then, we have sat in countless waiting rooms, and received the lending hand of hundreds of strangers. Still, sitting in that waiting room for Idan’s echocardiogram and EKG, surrounded by these sick children, part of me longed for the time when I felt that my beautiful blabbering happy little boy didn’t belong there. Now, I know he does, and there’s nothing that could have prepared me for how that would feel.
I cannot imagine the burden you are bearing now. You’re handling it all with such grace.
I read about Idan on Kveller and have been following you ever since. It is my hope your little boy gets wonderful treatment in Seattle. Praying for you.
Thank you Stacey, that is so sweet.
Prayers for you and your family! I have a coworker who has a little boy with the same condition as Idan. I was able to share your story with her and she has been in contact with you. I think it is wonderful how the Internet can connect people who are miles apart but sharing the same struggles! You guys are amazing parents and love radiates from your every word! Go get em’ Idan!!
It breaks my heart to read what you, Akiva and Idan are going through. We pray for you and keep you all in our thoughts.
Thanks so much Sharon!
What a poignant and moving post. Tears in my eyes reading it. But whenever you find yourself in a waiting room, feeling scared, close your eyes and imagine Idan’s Army surrounding you, propping you up. Because you are all in my (and so many other people’s) thoughts and prayers constantly. And every day is one day closer to a cured, healthy, Idan.
Raisele, that is exactly what I do! You all keep us going, keep us strong, and keep us positive. Thank you for being Idan’s (and our) army!
Amanda, you write so beautifully and powerfully – I don’t know if you had honed that gift before this experience or not, but I’m certain that through it you will reach many who need to hear your voice. You all are in my heart!
I wi all
I will keep your beautiful little boy in my thoughts & prayers along with you & your family. Stay strong & God bless you.