It’s report card time. Many kids cringe when they hand their parents that thin paper with their quarter grades on it. Some may worry their grades may be not be up to par or their conduct may be less than expected. My son is no different from others his age. He handed me his brown envelop with a bit of resistance earlier this week, not because he worries about grades or conduct but rather he is concerned I will be upset or disappointed in the number of absences he has had so far, this year.
I gave him a hug and we sat down together to review his attendance record. Deep breath… 1st Quarter: 7 absences, 2nd Quarter: 13! AHHHHH – it was worse than I expected, especially since last week was the first week of the 3rd Quarter and he had missed four of those five days due to a stomach issues. Yikes…well there isn’t much more that we can do, but remember we are blessed that Ben is alive and fighting. He is fighting to stay as healthy as possible. He is fighting to live as normal a life as possible. He is fighting to keep his grades up and behavior intact, despite the many medical challenges he faces.
We are blessed that Ben excels at academics. He has maintained straight A’s since he started school. He has participated on math bowl teams, competed in school science fairs and read more novels than I can keep track of. Unfortunately, the frequent absences (from illnesses to doctors’ appointments and of course his monthly infusions) caught up to him this morning.
Last night, Ben was having a ton of abdominal pain and had trouble focusing on his math
homework, among other things. I told him to put it away and then ran him a hot bath, hoping to make him a little more comfortable. Morning came, and Ben was flustered. He missed four days last week and another day this week and just missed too much instruction to truly understand how to do his assignments. He takes his academics seriously and was embarrassed that he could not figure the work out on his own. I tried to help too, but by then he was too upset to get anything done. I just leaned over and gave him a huge bear hug. It was then, that the flood gates opened. “Sometimes it is all just too much, Mom. I am tired of not feeling good. I am tired they can’t figure out what is causing this pain. I am tired of missing so much school. And I am going to miss two days next week – one for my MRI and one for another infusion.” I held him while he cried.
As a mom, I just wanted to hold him tight and not let him go! I wanted to tell him it would all be okay, but I can’t. And he doesn’t want me making promises I can’t keep. He wants answers that I can’t give and at this point, even his GI doctor is still trying to figure this all out. He is just a ten-year-old boy and has had to have an upper endoscopy and a colonoscopy in the last month, among other tests. In addition, he has had to tell me daily about his bowel movements – not delightful for anyone, but certainly not something my Ben wants to be doing.
As his mom, I wanted to just let him stay home today and rest…but we both knew that wasn’t an option. Absences are reserved for the days he can’t get out of bed or for medical appointments he can’t miss. So, it broke my heart to take him to school with tears still streaming down his face but that is what I had to do. We were only two minutes late but he needed another 5 or so more to collect himself before we checked in at the office. He then took a deep breath, put on a brave face and headed towards his class with red, tear-stained eyes.
We are blessed with an amazing school that supports us and does all they can to make Ben’s life a little easier. After he made it out of the front office and on to his class, Ms. Ines, who works in the front office, offered to call his teacher to give her a “heads up” on Ben so she could give him a little extra love and support this morning. I thanked her quickly and ran out before that kind gesture made me cry. As I was walking to my car, I heard Ms. Beth, the speech pathologist (and my dear family friend) at Alafia call my name. She saw Ben nearing his classroom with tears in his eyes and she wanted to check in on how he was doing. I thanked her for her concern and explained the latest Heilman medical issues. We talked through the school fence briefly but her words gave me reassurance.
I had the assurance that Ben would be taken care of. The assurance that his school family would keep a close eye on him today. The assurance that if he needed me, someone would reach out and let me know.
This is the side of disability that many people don’t see. The days that just getting up and getting moving can take all the energy your 10-year-old little boy can muster. These are the days that I choose to squeeze him a little tighter and pray over him a little longer. These are the days that chronic illness and pediatric disability just plain, out-right sucks.
Thank God it Friday!