I was always that kid

I was always that kid.

 In elementary school there was a room off of the library where I’d sit and throw a big beach ball with a boy with severe Cerebral Palsy.  In the summers, my mom and I would volunteer at Easter Seals.  I was that kid in middle school who opted out of Channel One news broadcast during homeroom to help out in the Severely Profoundly Disabled (SPD) room.  I can even remember most of their names and stories—shaken by a babysitter, multiple seizures at birth, genetic defects.  Perhaps, though never crossing my mind at the time, it was some ill-fated attempt of mine to bargain with God not to give me a “special needs” child.  Maybe somewhere in my subconscious I thought that by volunteering to push their wheelchairs around the middle school or to dance to Shaniah Twain I would somehow be spared the paralyzing fear of living it.

     Then, as I got older and understood a little more about responsibility, I was that young adult who lingered a little when passing a family with a handicapped child.  I was aware of trying “not to stare” in order to be polite.  The truth was, if I did stare it was because I pittied them—both the parents and the child.  I thought to myself “how do they do it everyday?”  I reveled in how brave they were if they had other, especially younger, children.  I never considered that they really weren’t given a choice.

You guessed it!  We got more news about Jackson’s Progressive Infantile Scoliosis today from Shriners.  Honestly, I am more confused now that I was before I received the call.  Jackson’s curve was originally 44 degrees, and after his first cast it was 40 degrees (4 degrees of correction).  That has always been fairly straight forward.  The RVAD (rib slant) is an entirely different story.  There are so many different numbers swimming in my head right now that I’m not even sure how to write it down.  Bear with me.

Back in September I was told that Jackson’s RVAD before being casted was 27 degrees.  Before he was put into his second (current) cast, I was told that his new RVAD was 23 degrees BUT that his original (pre-cast) RVAD was 51 degrees.  Obviously, this is a big discrepancy.  I waited almost 2 weeks to hear from Jackson’s doctor’s nurse to clarify these numbers.  When she called me today, she told me that Jackson’s original RVAD had been 27 degrees BUT that his RVAD before his second cast was 51.  The number 23 was not mentioned again, and she didn’t know where that number came from (how about the surgeon’s mouth?) or where it went.  If that is correct, Jackson’s RVAD actually worsened 24 degrees while he was wearing his first cast, although it was being held at 2 degrees in the cast itself.  NONE OF THIS MAKES ANY SENSE TO ME!

I requested that the surgeon himself call me because the numbers keep changing, and I feel that there is a breakdown in communication somewhere along the line.  Naturally, however, he did not call me back today … and he leaves tomorrow for a conference that lasts until next week.  Isn’t it ironic that 15 minutes of his time could have radically changed an entire week of my life, yet he still chose not to return my phone call?  In my angst, I telephoned Heather Hyatt-Montoya (the founder of the Infantile Scoliosis Outreach Program, ISOP) to discuss these numbers.  She thinks things sound fishy too.  She said that in over 10 years of working with Dr. Mehta herself, she has never heard of an RVAD progressing that much in a cast!  She suggested that while I wait to hear back from Jackson’s surgeon, I put together a packet for another casting doctor at the Shriners Hospital in Greenville, South Carolina.  Thus began a 4-hour ordeal of ordering x-rays, taking photographs, and writing a three paged letter to another physician.  Still, I really know nothing more than I did 2 weeks ago … except that now there is a possibility that Jackson’s scoliosis actually worsened rather than marginally corrected.  Oh yeah, and that now we may be in the process of getting yet another opinion and traveling to another, further-away, hospital for treatment.

I was always that kid.  Now, I’m that cynic.  I’m that mother who reads mommy-blogs where complaints are issued about being up all night with a teething child, and I think (sometimes aloud) “wah, wah, wah, I feel so sorry for you!”  I find myself thinking the strangest thoughts that probably never cross parents’ of “normal children’s” minds like ‘I wish this was just something like a simple cleft lip or hypospadias or strabismus.  The type-A, control-freak that lives inside me desperately needs a timeline.  I don’t mind the serial plaster torso casts, I just need a guarantee that they are going to actually work … and I’d like to know precisely how long it is going to take.  It can take a long time; I just want to know how long.  Unfortunately, that is not a possibility with PIS.

Granted, Jackson is not in a wheelchair … and I am thankful everyday that he has his mental faculties—he smiles, laughs, dances, and protests loudly when he’s mad.  However, Progressive Infantile Scoliosis is an absolute bear of a condition.  I cannot tell you how many times I have to bite my tongue when someone tells me a story about “a girl they knew in high school who wore a back brace.”  It is a completely and profoundly different condition from juvenile/adult scoliosis, and it is the most difficult to treat and only potentially fatal orthopaedic condition in children.  It sucks every. single. day.  Especially days like today.  It sucks because I have no idea what the future holds.  Heck, at this point (ahem), I have no idea what the past held because I cannot get return phone calls and/or straightforward answers.  Right now, Mehta casting is Jackson’s only option other than an expandable titanium rib that is surgically lengthened every 4-6 months until puberty.  However, with a condition that is progressive, waiting around for phone calls and correct answers doesn’t sit well with me.

When I’m not being cynical, I am mostly tired.  I am tired of making phone calls, faxing forms, and writing letters.  I am tired of mourning the loss of normal motherhood.  I am tired of making difficult decisions.  Most of all, I am tired of worrying everyday if I am making the best decisions for my baby.  I am exhausted from analyzing every detail that might have, could have, or should have gone differently.  I am tired of not being able to take a nap because I am slightly shaking from anxiety.  I am tired of fearing that Jackson may not wake up from anesthesia, that his excessive exposure to radiation might eventually cause cancer, and that the doctor is missing something or doing something incorrectly.  I feel like I have run 25.1 miles of a marathon, yet I am still standing at the starting gate.

I realize that was a very long way of telling you that I am still waiting for 100% clarification on Jackson’s scoliosis measurements, but it was my form of therapy.  And, I am tired.