Mystery Lane

Mystery Lane

Wednesday, November 12, 2014


One thing I think we all take for granted is our health.  It usually isn’t until we are sick that we realize how grateful we are for being in good health.  This happens to me every time I get sick.  I vow to appreciate being healthy as soon as I get better.  But when you have a child with special needs your appreciation for health takes on a different level. 

A couple of weeks ago on Sunday Jackson was kind of grouchy so I thought he was tired and put him down for a nap.  When he wouldn’t go to sleep I went in to check on him.  He had thrown up – all over his bed.  Fun, right?  We soon discovered he had a fever.  So we started the meds and jello.  The next day he still had a low grade fever so I kept him home from school.  His fever broke early afternoon and he was back to himself.  Tuesday he woke up totally wiped out.  I kept him home just to rest.  He was also a bit congested but didn’t have a runny nose or anything.  Wednesday and Thursday he went back to school.  He was still mildly congested but nothing too bad.  Friday he woke up and he was really sick.  Lethargic, low grade fever, congestion, cough and runny nose.  It was of course Halloween.  Kevin and I had been making his Halloween costume for a couple of weeks.  He was going to be Scooby Doo and we had built the Mystery Machine to wrap around his wheelchair.  By the afternoon it appeared there would be no Halloween for Scooby Doo.  He was very sick.  To top it off, I couldn’t get him to eat or drink all day.  Now if you know Jackson you know that kid LOVES food and eating.  I think eating is more important than breathing to him.  So I knew something was really wrong with him.  That evening I noticed a weird bite looking sore on his thumb.  He also had some weird spots on his chin.  Suddenly I remembered that the daycare Daniel and Sylvia go to had an outbreak of Hand, Foot, Mouth Disease.  Kevin googled it and sure enough it looked like the sores he had.  But he also had symptoms that didn’t fit that disease.  One thing I discovered is that Hand, Foot, Mouth Disease is an enterovirus.  With enterovirus being in the news a lot lately you can imagine where my mind went with that.  The next day, Saturday, he woke up and ate a few bites of waffle, but that was it.  He soon went back to lethargic, not eating, coughing and a non-stop runny nose.  He also wasn’t sleeping well, up most of the nights.  The sores on his chin had spread all over his cute little face.  The biggest one right on the end of his nose.  He looked like Rudolph.  By Sunday morning I was freaking out a bit.  I was worried about the enterovirus thing.  Kevin was out of town all weekend for work and about every hour I was flipping a coin on whether we needed to head to the ER.  By Monday, he wasn’t getting better, he was getting worse.  I called the pediatrician and in we went.  I am glad we did.  Jackson didn’t have enterovirus or Hand, Foot, Mouth.  He had a very bad bacterial infection and was on the verge of a very nasty ear infection (for the record, he is 6 and has never had an ear infection).  So we started the antibiotics that day.  He slowly started getting better.  By Tuesday afternoon our happy boy was back!  I kept him home on Wednesday just to give him one more day to heal.  By Thursday he was back at school.  Oh how I appreciate him being healthy!  Despite Jackson’s brain malformation and epilepsy, the kid is freakishly healthy.  He rarely gets sick.  Usually he only gets sick the two times a year when we go to Florida.  He pretty much always picks something up on the plane.  But never to this extent of being sick. 

The thing for me is that despite his relatively healthiness, he is still a kid with special needs.  And kids with special needs are much more susceptible to illness and (god forbid) death.  I am on a lot of online support groups for kids with PMG, epilepsy and neurological impairments.  Pretty much every other week or so one of these kiddos leaves this world.  That weighs on me, daily.  I think all parents worry that something bad will happen to their children.  But do any of you worry every day your child is going to die in his bed from a seizure while you sleep?  I do.  I wake up almost every night and turn the baby monitor up to hear Jackson breathe.  Just to make sure.  I worry that a simple cold will turn into pneumonia, his body will shut down and that he will die.  I know, I’m paranoid.  To me though these are real concerns.  Jackson is the love of my life, he is the greatest teacher I have ever had, he has taught me what total, raw love is, he has brought me more joy than I could have ever imagined, he is the reason I am who I am today.  He has given me so many gifts.  All I want in return is to watch him grow up.  I want to know what he will be like in 10, 20, 30 years.  The kid continues to be a mystery to me – will he walk, will he learn some more words, in what ways is he going to surprise me with is accomplishments?  When he gets sick like he was the last couple of weeks I worry that I might not get to see the mystery of Jackson unfold. 

I am so thankful for Jackson’s health.  Everyday.  We should all be thankful for something as simple as being healthy.  So many are fighting for their health.  On that note, I leave you with a quote by Neal A. Maxwell.    “We should certainly count our blessings, but we should also make our blessings count.”