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  • Jill Heilman

Lesson Learned

The middle school years are tough enough for anyone. I think we can all recall those awkward years. I mean, there are multiple new teachers now, more difficult subjects, changing classes, hormones raging, only 5 minutes between classes to use the restroom, and …I mean you have to change into gym clothes in front of an entire locker room full of your peers for goodness sake! It’s a big transition when you head into the 6th grade…it may be just one more year of school, but it’s a big jump and we are not talking over little puddles but a good size pond at least! And in Ben’s case, this week, it felt like he was jumping across Lake Okeechobee! You see, my little man is used to grades coming easily and little to no effort needed to get by when it comes to academics. Now that he is no longer in his neighborhood primer, he must navigate six classes a day, make new friends, complete homework for each class (usually 2 hours per night), fit in four days of swimming each week, pack clean PE clothes, layout his uniform for the next day, pack his backpack for morning and get ready for bed.

On top of all that, Ben has an added layer to his middle school years. Being diagnosed with Primary Immune Deficiency means more frequent illnesses, plenty of doctors appointments, and monthly infusion days at the hospital. For Ben, some of this is 'old hat' and some of this is all new territory. He is the kid who missed over 40 days of school last year and still managed to get straight A’s. Just with his infusion days alone, he is guaranteed to miss 10 days of school at a minimum this year. On top of that Ben is usually wiped out the day after infusions, so he tended to miss the day after his infusion in previous years. With middle school upon us, we had hoped to just schedule him for Fridays so he could rest on the weekend…but noooooo, that would be too simple and, Ben is a Heilman after all, and Heilmans don’t do anything easy. It turns out Ben is the most difficult IV stick in the clinic and only Nurse Cindy can get a line in him and you guessed it, she doesn’t work on Fridays.

Well we are just three weeks into the school year and yesterday Ben headed to All Children’s for his first IVIG as a middle schooler. I think the day can be summed up in the two Facebook posts I made yesterday to my personal included:

Crazy morning, bad traffic and cranky drivers but we made it (30 mins late) but we are here! Needles are in and Ben has gotten most school work done - at least he took advantage of being stuck in traffic. Now we "rest" for four hours and head home.

Later followed by:

Special shout out to the amazing nurses at All Children's Infusion Clinic, especially Nurse Leslie who has been one of Ben's nurses since he was a year old. Out of nowhere this morning Ben's face went flush during infusion, he got a wicked headache, nauseous and felt "fuzzy". I quickly told Leslie and within seconds his IVIG was stopped, doctors called, IV fluids started, medication for symptoms given and vitals were monitored. It's been an hour now and he is doing MUCH better and we hope to restart IVIG soon. Today was a reality check for me. I grow so accustomed to what normal is for our kids that i forget how serious things can get in a very short period of time. So today I am thankful for our nurses! You are all amazing!

Ben not feeling his best.

As I said, Heilmans never do anything easily.

Thankfully Ben

rebounded as only Ben does, with true grit and a witty sense of humor. When he was done after 6+ hours at the hospital, the nurses asked Ben if he would like a wheelchair for getting out to the car. “No I am fine.” “Are you sure?” she worriedly persisted. “No, I am good.” After the nurse was out of earshot, Ben leaned in, “the fact is, I really could use one today, but I want to get my legs moving and see how I am really feeling. We can grab one downstairs if I don’t feel good.” This kid is a trooper…and worries the heck out of me. "Are you sure? I can get a wheelchair." I constantly checked on him as we walked to the elevators, and headed downstairs. When we got to the lobby, I made a b-line for the wheelchairs. “NO! Mom I can do this. I feel like I was hit by a Mac truck…all my senses are overly heightened, and I am feeling really weak. But I can make it to the van.” After several more ‘Are you sures,’ we headed to the parking lot. As we got to the bridge connecting the hospital with the parking garage, Ben stumbled, I turned to catch him and found him bent over laughing hysterically as he pulled a big one over on his momma. This kid! “I really do feel like crap, but you seem like you needed to lighten up a little. I couldn't resist.” How could I be mad with him after that?

He did get queasy on the way home, so we stopped for a soda to settle his stomach. I tried to keep him distracted with my engaging stories and charming wit, but he just asked me to be quiet so he could have time to play Clash Royale on his phone. By the time we got home, and he took an hour rest, Ben decided to finish the last bit of his homework. He had done Science in the car and the rest of his classes the night before. But he had not made up his Language Arts yet. Even though he felt like crap, Ben headed upstairs and did his make-up work, determined not to get behind.

He woke up this morning feeling weak and tired, but didn’t want to miss anymore school. As we drove to campus, a headache hit him strongly. He decided to run by the school nurse’s office for some Advil before he went in early to make up a math quiz he missed the day before. (I know all this because the nurse emailed me with an update). He still had the headache during the test, but the meds kicked in before the official school day began.

I didn’t hear anything else the rest of the day, that is, until just ten minutes after the final bell. Ben must have made it to the carpool and had access to his phone because these were the texts I received in succession.

I know your gonna ask….MY DAY WUZ TERRIBLE.

I forgot my LA binder AND my science composition NB

and therefore got a zero for each becuz I had my science

vocabulary and lighthouse HW in them.

So now my science grade is a B just because I was SO tired

this morning that I forgot to pack my stuff. I would probably

be crying right now if Mark’s mom hadn’t gave out chips.

Love that kid! A few slices of salty, potatoes was enough to distract him from his rough day. Thank you Barb for your random act of kindness. You have no idea how much that changed the course of Ben’s afternoon! Go Carpool Moms!

As for the school work, I looked around the house…Sure enough, the science notebook was in my bag from the hospital yesterday and the language arts folder was up in the computer room. Dammit!

Unfortunately, this is one of the extra factors Ben has to adjust to when incorporating his infusion days into middle school life. Lesson Learned. Even when you are tired and feeling like you have been hit by a semi, you still have to pack your backpack in the evening and recheck it in the morning.

I have to give the teachers credit, Ben’s Language Arts instructor said he was absent the day before so he could turn his work in tomorrow. Nope. Ben couldn't say thank you and keep his mouth shut. Ben is my rule follower. He told his teacher he had to fill out the zero form for that assignment because it was homework that was due yesterday (the day he was absent) and policy is "I need to turn it in today, but I left that at home. So I get a zero." He then got up, filled out the form and accepted the zero. Next, Ben headed to science class. As he sat down the teacher announced that he would be collecting the vocabulary homework, of all days, it was today. Another zero. And in science he was just barely clinging to an A with a 90.4! He was devastated! “I’ve never had a B!”

After he got home, Ben and I were able to debrief on his day. "Well buddy you can skip swim tonight if you want to." He quickly responded, "No, I really should go, I missed Monday because of rain and missed Wednesday because of infusion. If I want to move up to the Blue Team soon, then I need to go tonight." What? Who is this kid? If anyone knows Ben, they know he is not known for his athletic endeavors. Where was this excitement for sports coming from? He actually wants to make it on a competitive team! Who cares - I will take it! Ben really is turning into a middle schooler - he is maturing in ways I never would have imagined.

Then over dinner, he reminded me that he is still an 11-year-old boy who has a lot on his plate and is just trying to take it one day at a time. As we were eating, he said “you know one benefit to these collared shirts for this school?” “What buddy?” “I can do this.” He then lifted his collar up and wiped his eyes. “What’s that for?” “It helps for the three times I cried at school this year. That way, no one knows.” “Oh Buddy, when did you cry?” “Twice today, in language arts and then again in science. I accept that I got the zeros but it was tough. And then I cried last week when I didn’t get in the Minecraft club. I really wanted that.” Is he trying to melt my heart. How much more can we go through today? Then a miracle happened…I leaned over gave Benny a great big hug and ….and…he hugged me right back. One of those long hugs with arms wrapped around. "I needed that today." He said, "I know Buddy, me too. Me too."

Phew - this has been a long day. Before I sat down to write up my thoughts, I had to do the Thursday night parent homework of checking Ben’s grades online and signing off on them in his agenda. Wait – what is this, Mr. Hough gave Ben a 10/10 on his vocabulary homework! How did that happen. "Ben come look at this!" I showed Ben how his teacher gave him full credit for his homework. “He probably forgot I didn’t turn it in, because he just stamped everyone’s paper. I will let him know tomorrow.” I asked Ben if we could just write this off as a blessing. He just smiled, shook his head and reminded me "I am a rule follower mom. A rule follower."

Who knows, maybe Ben will forgot to remind Mr. Hough tomorrow. And I doubt his teacher reads this blog, and I am not telling anyone. So if you could do me a favor and not mention it either, maybe Ben can hang on to that A in science!

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