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Sunday, October 1, 2017

When the Bright Side gets harder to find

This has been a rocky start to our school year, and I have to say that I'm struggling to see the bright side of things.  As I write this, Madelyn is laying on the recliner next to me, hooked up to oxygen after a Sunday spent at the hospital.  These occurrences have somewhat become our normal.  In the 30 days of September, Madelyn has had 6 appointments at our local medical facility.  She's had 4 trips out of town for her specialty care.  We've become used to always being on the go after work and on our days off- a trip to St. Paul for a scoliosis brace, sure!  A trip to Minneapolis for an orthopedic procedure, why not!  Another trip to St. Paul for the immunologist, no problem!  That's our job as Maddie's parents- to make sure she gets the best care possible, wherever that may be.  It may be exhausting hauling a medically fragile child on a 6 hour round trip car ride just to see a doctor for an hour, but we've made it work. 

What gets challenging for me- the highly organized, always trying to be positive, constantly scheduled mom is the unplanned events related to Maddie.  This weekend was the Oktoberfest parade.  Maddie was sick with a cold at the start of it, and by that evening she was seriously sick.  The next morning, we're meeting with our doctor about respiratory supports and the pros and cons of hospitalization as it relates to her palliative care plan.  We're home now, but that doesn't mean she's better. That's something to get used to too.  We'll take over providing respiratory treatments and monitoring her oxygen.  I'll take off work tomorrow since Greg has taken off a lot these past few weeks.  We'll get through it. 

Seizures.  Another challenge for us.  They show up at the worst time.  Madelyn has had two prolonged seizures at school this month.  Each time an ambulance had to be called.  And each time, I was at work, in a meeting.  Getting called by your child's school to hear that an ambulance is coming for your daughter is terrifying.  What makes it worse is the logistics- telling your coworkers you have to leave, trying to find your keys, getting through traffic without getting in an accident, and making it to school to get to your daughter's side without totally falling apart.  One time is what you think of as the worst case scenario.  And when it happens again, it's hard to process.  Worst case scenarios can't keep happening, right?  I really don't wish this aspect of our life on anyone.  There are many amazing aspects of being a special needs parent, but this is not one of them.  Madelyn has recovered, and she will forget it happened.  But Greg and I won't.  We won't forget what we were doing when it happened or how we felt.  We won't get over the fear of it happening again, and furthermore the fear of what if she doesn't recover next time. 

We have absolutely no tie to St. Jude Children's Research Hospital.  But, like the rest of you, I see their commercials and I remember the phrase: "Be thankful for the healthy children in your life and give to those who are not."  For whatever reason, that phrase comes to my mind frequently.  And that's what I'll end with here.  Be thankful for the healthy kids in your life!  Send positive thoughts and prayers to those who are not.  Give us your patience.  I know that this will pass and we'll get through it (hey Madelyn is almost 4 years old!).  Help us remember the bright side. 

xoxo
Sarah