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“The world breaks everyone and, afterward, many are strong
at the broken places. –Ernest Hemingway, A Farewell to Arms
A lot has been going on. Zane has a lot going on. But I’ll
spare you most of the details.
Yesterday, Zane and I went to an overdue orthopedics appointment
to address his scoliosis. We sat around in the waiting room for 1 hour and 20
minutes. Of course, I complained. I’m sorry. It is utterly disrespectful to
make patients and their families wait that long. I considered walking out, but
this appointment (not the doctor, mind you, but the appointment) was way too
important for us to leave.
Bottom line: Zane’s scoliosis is worse than I imagined. He’s
had x-rays twice before and no one said anything about the degree of curvature
in his spine. Apparently, it’s not good. The doctor told me that if Zane were a
teenage (rather than a six-year-old), he would recommend spinal fusion surgery
for him now. But Zane can’t have that at his delicate age because he’s still
growing.
So, Zane has to be fitted for a new TLSO, which he has to
wear all the time. To me, this is sheer torture. I wouldn’t want to wear a
brace all day long. It is restricting, especially to a child who already
suffers from asthma and respiratory issues. Next, his curvature needs to be checked every six
months. If the brace does not hold it in place (because a brace does not undo
the damage already done), Zane will have to undergo surgery for rod placement
in his back. And he’ll have surgery every six months going forward from there
to extend the rod or even replace it altogether.
I am so upset. All of this seems gravely unfair to a little
boy who is such a selfless and loving soul, who has already been through so
much. I see this with so many beautiful kiddos with Trisomy 18. They are so
happy and pure, and yet they have to suffer.
I’ll tell you right now, I do not subscribe to the notion
that things happen for a reason or that aspects of life are simply meant to be.
In fact, hearing those words puts me in a very cranky mood. What I do believe
is that life is unfair. Struggles and difficulties are not doled out according
to who needs them and who deserves them. If that were the case, someone else (someone
who’s done horrible things to others) would deserve this prognosis. Because
Zane does not deserve this.
Shortly after Zane was born, we met with the hospital
chaplain. I needed someone who could make heads or tails out of his Trisomy 18
diagnosis. She told me it has nothing to do with God. A loving God would never
expect us to suffer. Instead, she told me that it’s the chaos of life that
caused the cell division in Zane. I can live with that kind of explanation.
So—as Ernest Hemingway stated in his novel—I do believe the world breaks
everyone. And hopefully in the end, Zane and I will be stronger in the broken
places. But the broken places never fully mend.
