I have been
thinking a lot lately about Maggie and how she is doing out there in the
wilderness in Utah. It has been a bit
quiet around the house…and Easter Egg dying didn’t have the drama we usually
have. AND, I am trying to figure out
what I should do with myself with all this free time! It’s quite an adjustment...
I had a dream last
night that I went to see her (we DO get to go see her May 10-11 for a Parent
workshop!). However, in my dream I
wasn’t allowed to see her because she had not met the criteria for us to see
one another face-to-face. WOW….I don’t even
know what that means. (Nobody knows what it means, its provocative…no its not--it gets the
people going J -reminds me
of her with her obsession with RAP!).
And I laugh a lot with her about that stuff….so, I miss her.
BUT….what if we
had not sent her on this journey? What
if we had kept on going along…hoping we could make a difference? Hoping we could just work that much harder,
push her that much more, be more consistent, and not back down from her
constant pushing/negotiating/arguing… the biggie…WHAT if…this program does
NOTHING to help her? What if this is all
a scam…all a shot in the dark? What if
she leaves there after 10 weeks having made no progress? Well…..for me it is simple. I don’t spend too much time dwelling on all
of that because it makes no sense to waste time thinking about it. We made the decision and now it is up to her
to OWN the experience (as Robert so wisely advised her to do).
As parents our
responsibility is to give our children the tools to live independently,
responsibly, and morally. A parent’s job
is to provide opportunities for our children learn how to make good
choices. It is our job to protect
them. However, we also need to know when
to push them. We need to make decisions
that sometimes don’t have clear outcomes.
We need to make some TOUGH decisions.
Parenting is NOT easy and it comes with NO textbook. Have you ever noticed that there is no book
called Parenting for Dummies? Maybe
that’s because parents should not be dummies!
But I suspect it’s because there are too many variables. No child, no parent is the same. Kind of like snowflakes!
Nicolas is one of
those snowflakes. He has Williams
Syndrome. Williams Syndrome is a rare neurodevelopmental disorder characterized
by a distinctive, "elfin" facial appearance, along with a low nasal
bridge, an unusually cheerful demeanor and ease with strangers; developmental
delay coupled with strong language skills; and cardiovascular problems, such as
supra-valvular aortic stenosis and other cardiovascular anomalies. Nicolas was born with a severe narrowing in
his Aortic arch (called Coarctation of the aorta). He had surgery to correct that when he was 5
weeks old. In the “olden days” Nicolas
would not have survived. That surgery
changed the course of his life and ours.
Nicolas has been in and out of the hospital. He has had many surgeries and
procedures. He is fearful of hospitals
and any time we go to a doctor he asks the questions “no shots? No mask?
No surgery?” When he knows for
sure that the answer to all of those questions is no, he says with relief
“phew!” What IF he had not had that
initial surgery? How different our lives
would be. When Nicolas was 8, he was a
ticking time bomb. His blood pressure
was 180/100. He was on max doses of
every class of blood pressure medicine.
He was on 9 blood pressure medicines!
When I went to pick up the medicine at the pharmacy the pharmacists
would ask how old Nicolas was—is he 80? Each
night when I put Nicolas to bed I had tears in my eyes as I kissed him
goodnight...wondering the unthinkable.
It was the most stressful time of my life. I spent countless hours in doctor’s offices
and on the phone asking if there was anything we could do for him. I cried a LOT. I had developed a DEEP love for my friendly
and cheerful child and I would do ANYthing to help him. EVEN if it meant doing an extremely rare and
almost experimental surgery to “fix” his Aorta.
I had to make a decision that was very controversial. As his parent I had to make the toughest
decision anyone could ever imagine making.
Should I put him through surgery in HOPES that it would make a difference? Do I go against all but one of his doctor’s
recommendations? One doctor asked me “What
if he dies on the table? Wouldn’t you
rather have the opportunity to enjoy whatever life he has left in him?” Wow....tough question. However....I have a degree in nursing (thank
God!) and I knew too much about the consequences of blood pressure in the
ranges Nicolas was experiencing. I was
more fearful of that, than taking the chance that a skilled surgeon could make
a difference. I went forward confidently--
knowing that there was a 50-50 chance that Nicolas would die on the table. I had to think positively. I had to think how great it would be if this
surgery “fixes” his problem. I had to
make that decision even though there was a BIG what if? So, I was thinking—what if he survives and
has a healthier life because of it? I
was willing to take that chance. The way
I saw it was that status quo was not pleasant.
I don’t “do” status quo well. Ask
anyone who knows me. A teacher told me
when Nicolas was 11 that he would never read.
He is reading because I fought the system. Nicolas was not riding a bike when he was 12
despite all our efforts. He is now
riding a bike. I can tell you that
before I fought for all of these things, I had serious doubts that any of my
efforts would make a difference.
So here I am today
with serious doubts that putting Maggie in a therapeutic program is going to
make a difference. After all, she has a
fundamental reason for all of her idiosyncrasies. She has Asperger’s. Many people question WHY I would send her
away from the security of her own home in HOPES that she would change her
ways. My question to them is WHAT IF I
didn’t? What if I kept things status
quo? What kind of adulthood would she
have? I am going with the same answer I
had when I sent Nicolas into that operating room...what if she comes out on the
other side of this with more effective coping mechanisms to handle life’s
challenges? What if she CAN modify her
reactions to what society expects of her?
That’s where we are today......praying that it will have a positive
outcome. SO, next time YOU have a big
what if question....think about the positive outcome and go with that!
Love and blessings!
Laura
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