Landon's Story

Friday, May 22, 2015

Don't Judge What You Know Nothing About

Since I got home from class today I've:

  1. Taken one child to OT and Speech. 
  2. Made a trip back to school quickly to handle a situation that could've been handled in person the hour earlier, but hey, who doesn't have the time for this?
  3.  Drove back, picked up child from OT/ST to get his blood drawn for genetic testing. 
  4. Held screaming child who literally was crying, "SOMEONE HELP ME" while getting his necessary blood draw. 
  5. Feel like a terrible mom holding child down.
  6. Started towards the grocery store to buy supper
  7. Detour to home half way there due to the other child coming down with a nearly 105 degree temp and screaming non stop
  8. Called the doctor 
  9. Helped while the second child threw up
  10. Lost patience with 1st child who was just being 5 at a moment when being 5 wasn't helpful
  11. Felt like a terrible mom again
  12. Let 1st child play video games as a reward for blood draw and because keeping your cool is nearing impossible 
  13. Talk to the doctor on the phone 
  14. Head for the clinic
  15. Put child in car seat
  16. Remembered we should probably bring a bucket with us and called dad to bring it down. The 20ft walk was too long and as if scripted, child #2 vomited all over his car seat. 
  17. Took him out of the car seat 
  18. Changed him in the back of the car while dad adjusted the older child's car seat to fit
  19. Pulled the soiled car seat out and handed to dad
  20. Drove to the doctor with screaming child
  21. Walked into the doctor with screaming child, and checked in. 
  22. Child smell like vomit, feel like a bad mom for having the vomit smelling child
  23. Sat in the waiting room with screaming child and a vomit bag. 
  24. Fell like a bad parent while others glared over at my inability to calm screaming child
  25. Went back to talk with the doctor...fever still 102 and he's writhing in pain.
  26. Attempted to understand everything the doctor told me. We had an obvious communication barrier of background noise. 
  27. Picked up screaming child, blanket, sippy cup, AND routing slip to go to xray
  28. Felt like terrible parent as we got glares from the entire hospital on the walk to xray
  29. Sat with screaming child in xray waiting. 
  30. Felt like terrible parent as we got stared at in xray waiting
  31. Undressed screaming child to prepare for xray. 
  32. Held down screaming child for xray.
  33. Feel bad as child yells your name to hold him and you can't.
  34. Picked up screaming child now wearing only a diaper, his clothes, blanket, sippy cup AND routing slip and headed to lab. 
  35. Feel like a bad mom while walking through hospital with now naked child
  36. Greeted the lab people we'd just seen 1.5 hours earlier with a different child. 
  37. Held down a screaming child while he got the necessary blood work (the same blood work he had 2 days ago). 
  38. Felt like a terrible parent holding my child down to be hurt by someone
  39. Picked up everything YET again, with an even louder screaming child and headed back up 3 floors to the waiting room. 
  40. Sat in waiting room with a screaming child. This time we were the only one's there. 
  41. Screaming child's medicine finally kicks in and he falls asleep. 
  42. Mommy and now peaceful sweet little child nestled in for some very rare cuddle time.
  43. I LOVE him so much. 
  44. Actually communicated with the doctor about the fact that child will be ok and needs a prescription
  45. Headed home. 
  46. Dropped off child with dad 
  47. Left home childless to go get something for supper and pedialyte. 
  48. Feel guilty for leaving dad with sick child and crazy busy child
  49. Bought pedialyte from the store
  50. Gave up on supper ideas and had dad order pizza
  51. Headed back to the pharmacy to pick up prescription
  52. Picked Up pizza and went home. 
  53. Came home to 2 tired/cranky/and hungry children. 
  54. Feel guilty your child isn't getting supper until way past their bedtime
  55. Bedtime routine for both children

I'm now lying on the couch with a "beverage" and breathing for the first time in hours...something I don't typically allow myself the time to do. And by the way my house is a disaster and sick child will probably still be up half the night. Oh, and the car seat still needs cleaning and I'm sure we will have more dirtied laundry overnight. So in 15 minutes the work will continue, because it has to.

When  you're judging someone else about their ability to fit right into "your" ideal schedule. When you're setting deadlines earlier than needed that they are telling you they can't make. When they literally tell you to please give them the work so they can do it. Please think about the fact that you know nothing about what goes into their everyday life. You know nothing about the balancing act that is raising two young children both with health conditions, graduate school, and work. You know nothing about the guilt that goes into not being able to be the perfect mom AND student because its not possible. You don't know that every morning I wake up after the average 3-4 hours of sleep (if that) and have to remind myself that its all for the best in the long run, because without that reminder I'd fall straight to the floor in tears. You don't know what its like to know that failing at this point would leave you with the inability to properly care for your children. You don't know how hard it is to stay upbeat, cheerful, and not want to bang your head on the table when you're sitting in class knowing your child needs you now but also knowing your child needs you to be in class. You can't possibly understand because you've never been there. Instead of judging and making assumptions, maybe communicate with them. Collaborate actually, because the person who can balance the above list of everyday life and feel mostly "normal" about it....can easily do what's asked of them if actually given the chance.

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.