Landon's Story

Wednesday, May 6, 2015

When the Grades Come In

Being a parent of young kids I would guess is always a difficult balancing act. Being a student and a parent seems to add just another ball to the stack that you are balancing on. By the time you add Epilepsy (or any other chronic health condition), I picture us all standing on 3 balls (each stacked on top of the other) with a flock of birds flying in all directions, hitting you from every angle...and OF COURSE the phone is ringing, and it's the doctor you've been trying to get a hold of for 2 weeks. Somehow answer it without falling off the balls and you've come close to accomplishing what "typical" every day life is like for too many families. I don't even have images for when things become atypical, pure chaos.

As my final grades come in for another semester in what seems to be an endless path to earning a doctorate I have to remind myself of this image. I'm one of those annoying people who's determined to get all A's even though B's and even C's would get me to the exact same place in the end. If you don't like us, I don't recommend deciding to go into any profession that requires a graduate degree or higher, especially not one that is highly competitive, because you'll be surrounded by us.

I look at my final grades and this time I'm trying to remember everything that happened in the last 5 months of our lives. We've spent too many hours in the ER to count. We spent 10 days admitted in the hospital, on I think what has been a largest roller coaster yet. We were transferred 3 hours away from home, at 1AM (just 5 hours after being discharged) with nothing but the clothes we were wearing and a cell phone. We were in same day surgery, and had an overnight hospital stay
following surgery. Instead of spending all nighters studying, I many times was juggling studying, taking care of a teething 20 month old and chasing the 5 year old who refuses to sleep back to bed. We spent 5 hours on our bathroom floor one night, with a 5 year old who literally was trying to physically run out of his body away from his pain, going in and out of seizure activity, and a mommy who was doing everything possible to keep the bucket nearby and convince her poor boy that he really needed to take the medicine to feel better.

We've fought with insurance companies, called doctor offices to remind them they STILL need to fill out paperwork so that we can call the insurance company again and remind them to look at the paperwork, so that we can then AGAIN call the doctor to tell them what the insurance company said, and remind them to fill out the additional/new paperwork the insurance company now wants. We've visited and talked with the school system, and gone through several testing appointments in order to get ready for the soon approaching Kindergarten. We've dealt with countless typical childhood illnesses in amongst all these things. We also go to a minimum of 2 therapy appointments per week, usually 1 doctor appointment of some sort (check up, pre-op, follow-up, or acute illness) and someone has to have a job so work too. Oh yeah...and do we need meds refilled...who's going to the pharmacy today?

I've emailed our doctor so many times we actually joked today about the fact that the 3-5 messages that for some reason have not made it through the messaging system are statistically insignificant. We haven't lived in this area for even a year, but literally the entire Children's floor of the hospital and
clinic knows both of our kids - not just by name and face, but know everything they're into. It's amazing how Ninja Turtle and Pokemon things suddenly appear at the hospital whenever my son is admitted because the nurses and doctors are absolutely amazing.

I remember all of these things that "we" went through, and really I have a hard time saying "we". The people who go through these things are my children. One more than the other, but they are both affected. My 5 year old child who comes up with one request before surgery,and its to have his IV placed anywhere but his hand so that he can easily play his video games. My nearly 2 year old who has spent so much time in a doctors office he's already picked up how to use the scale, thermometer, blood pressure cuff, pulse ox, stethoscope, and otoscope. These kiddos have SO much to go through, and they stay SO strong. That's how I get through it. I'm asked often, and that's how.

It's because staying up all night studying, having 2 finals, a presentation and 2 assignments due in one day, working 12 hours during the week and 30 hours over the weekend, or any of the other million things on my list, could NEVER compare to what my kids go through. They stay strong, so I owe it to them to stay strong myself. Let's be clear, this doesn't mean I don't melt. Tears have been known to escape while I'm holding my son down post seizure, coming off of valium, and he's getting his 5th IV stick and they missed again so they're digging around, and all he can scream is "I'm done!". They came out the
night we ended up back in the ER, 5 hours after being discharged, and they come in to tell us the ambulance he just got off of will be coming back to emergent transfer him to the hospital that 2 days prior had cancelled his routine transfer because they were "full". I barely held it in the time my son's pediatrician who had obvious bags under his eyes came into the ER room from his home to specifically see my son, and then he stayed and helped hold as they tried and tried to put in an IV, and I don't even know why that one hit me so hard.

I owe it to my kids to keep going because they're being stronger than I could ever be and they're too young to even know what strong really means. They keep fighting, so who am I to give up? Everything I fight for will change their lives for the better and they're SO worth it. So, now when I look at my grades I try to remember that all that matters is that we're still all getting by. We're still all fighting, and it's all worth it for them.

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