I remember a week ago the night before the appt…imagining
in my head would I would write in my head after the appt on this blog.
Not much more than that. It would have been self-explanatory
and enough said.
Unfortunately I cannot write that simple post.
It’s a lot more complicated than that.
Beauty had her dreaded scoliosis x-rays and appt with the
orthopedic surgeon. Almost routine by now after so many visits to hospitals,
brace fittings, doctors, X-rays. This is part of our regular life. We both go
to all appt. It’s a routine.
This was the first appt where I was not in a full on
anxiety mode before the appt asking people to pray for us and touching lucky
spots for wishes. We felt safe. Her last appt and x-rays 6 months ago her curve
was stable at 35 degrees (not that a 35 degree deformity of the spine is good
or easy but it is better than the surgical 40) the curve was stable. She was 11
months post menses and already 5’4.We felt safe. So did the surgeon.
As I entered at hospital the usual anxiety took over, the
heavy breathing, the quickened heartbeat, the sweating, the fights with Beauty
who of course is living her own version of hell entering that place. The
unknown of what is to come. But still we all felt safe. My husband was as calm
and cool as a cucumber of course.
She takes the x-rays …hard to think of the amount of
radiation that has been put into my beautiful daughter’s body over the last two
years…and we wait.
The surgeon walks in with three medical students and a
nurse. Not a good sign.
“Things
are ok, but have progressed. She has grown 2 inches so not surprising, but I
would have estimated she would have been stable. We will decide what to do in 6
months”
???????????????????????????????????????????
Then I ask the question.
“What
is her curvature number?”
“It doesn’t matter-numbers mean nothing.”
I insisted. “I need
to know the number”
“She
is 40 now.”
And I lose it. Right there and then in front of the
surgeon and his annoying medical team. In front of my husband.
Most
importantly in front of my petrified and scared and beautiful broken daughter.
I lose it for the number 40. The scary number in scoliosis.
The number you never ever want to reach. Where surgeons operate and put
broomsticks in your child’s back. Where your child undergoes the second most
dangerous surgery of mankind. Where your child is off 3 months of school in
pain . Where she cannot do any physical activity for a year. And for a lifetime
who even knows what happens?
I keep crying and he says he is optimistic. More than the
news heard I am upset of my reaction. How can a mother be this bad, and
uncaring and weak and unthoughtful? I will never ever forgive myself for these
moments (hours). I damaged my daughter.
And I could not control it as hard as I tried.
The surgeon went on to explain that he was hopeful and optimistic
and that he doesn’t think she will require surgery but we will see in 6 months
where it is all at. We will wait…again.
I asked him if our daughter could leave the room as
wanted to ask him more.
He said no. at 13yrs old she is his patient and has to stay and hear it
all and is ultimately the one making a decision.
He went on to explain that she is no longer a candidate
for the simpler less invasive surgery (which trust me is no cup of team in
itself!). If she needs surgery it will be the full on life changing spinal
fusion. But he is hopeful and optimistic and will see us in 6 months.
And he and his team left the room.
I kept crying. And crying and crying all the way home.
I
was not strong for the person who needed it the most. I collapsed. I had hit my
limit of self composure. I had enough.
Sure on the way home my husband explained my reaction and
I attempted to also through tears-but nothing would be enough to make my
reaction ok.
Sure when we got home my mom called Beauty and explained
that I was traumatized as a kid by so many hospital visits and medical issues
(hip displacia and brace as a young infant and toddler) that this was an
unconcious reaction. Sure I explained that having a sick Dad all my life
traumatized me and made me react like this to medial news. But never ever would
this be enough. Never.
Our daughter is one of the most resilient mentally and
physically people I know. I scared her that day.\
I
was not there for her in her time of need.
I apologized, I begged her pardon and kissed and hugged me and told me she understood. She was gracious and understanding (a
small miracle in itself)After a few hours I got back to rational and normal and
action focused and a good mother. But for me? That was too late.
Now we are back to hopeful and optimistic and ignoring
google and website and studies.
We are happily living life and trying to
repress the wait of the next 6 months. I would almost say we are coping very
well all of us. Hoping for the best.
Beauty is doing well. Her parents a little less well.
The next 6 months will be hard for her as we were
supposed to decrease the day brace in hours and maintain the night brace as
usual. Now we will up the day brace to the maximum hours and keep the night
brace. The older she gets the harder this all becomes. I don’t have to explain
that an almost 14 year old beautiful girl does not want to wear a brace. One
who wants to be free...and in how so many ways is in prison in her own body.
People around me tend to think its ok. That it is not
that hard. That it looks fairly comfortable? That it’s an obstacle but she will
be just fine. We as her parents try to tell ourselves the same thing.
But the reality is our daughter ,may have worn a brace 20
yrs. a day constricting her, hurting her, causing her bruises on her pressures
points, not being able to take a deep breaths properly as the brace constricts.
And then end up with spinal fusion surgery after all of this.
And that is the reality. And the reality sucks.
Of course I will make it all beautiful. Of course I will. I am back to trying to
strive for the mother of the year award, I am strong and capable and strong and
resilient.
And so is she.
But in my heart? I am tired of having to make crappy
things beautiful.
We are all tired.
I just wanted to say “Phew…”
