One of the hardest parts about being a parent of a boy with
Duchenne is worrying about how the changes and hardships will affect our son
emotionally. Just like any other parent,
my primary goal is to ensure the happiness of my children. As the years go by, I understand that my
fears are just that – my fears. I look at his disorder from the perspective
of a healthy adult who has lived half of her life already. It is impossible to imagine my life as a
handicapped individual.
Matthew is not yet handicapped, and God willing, he may
never bear that title. He has, however,
in his short life, endured a number of difficulties, treatments and limitations. The fact is that he has navigated all of
these experiences beautifully because they were his alone and a child has the
benefit of owning who he is much easier than an adult can, in most cases.
Duchenne will always be a part of who he is,
but that is not necessarily a tragedy.
The keynote speech by Luca Buccella at the PPMD Annual
Conference this summer illustrates this point beautifully. As an adult with Duchenne, who has endured
many of the changes that DMD brings, he still has a positive outlook on life
and his purpose in life. For me, his
words are soothing and healing because they resonate hope and strength for our
boy and our family. I share them with you:
Hello everybody, my name is Luca
Buccella, I am twenty-one, and I'm here to tell all the boys with DMD and their
parents, that a future is there. And I can say that honestly, because the
future that I started planning when I was eight has now become my present. To
tell everybody that even the "less fortunate" can have a full life.
In many charity campaigns - at
least in Italy, I don't know if it's the same in the United States - we hear
the expression "less fortunate than us" referring to disabled people.
Well, I feel I'm fortunate, or lucky, in many fields. And then, is there such a
thing as fortune? Actually, fortune is useless without a strong will. But with
your will, fortune becomes mere clay, that you can reshape and transform with
your bare hands, just as you wish.
We must be the first to consider
ourselves as the normal people we are: the revolution must start within us. But
it's not because of our disability that we must take things for granted: we
must earn our chances, nothing's free, we have the same rights and duties of
every other human being.
Our bodies are handicapped, not
our souls: DMD doesn't determine the people we are, it doesn't make us better
or worse than anyone else. But it's a part of ourselves that we must learn to
live with. It doesn't represent what we are, but it may be considered as a
friend, sometimes annoying, with whom we must learn to coexist despite the
fights. It's not a part of ourselves, but it compenetrates us, and, if lived
positively, can even make us better people.
Just remember that it's not the
disease that makes us better, but the way we face it. We must never think that
our disability makes us better than others, or even special. We are unique, but
that's just like every other human being. We don't want to be seen as pure
spirits, light bearers with our soul tempered by years of sacrifices: our
disease doesn't determine our future, we have to do it. We can be anything we
want to be, if we convince ourselves. And to become the people we want to be,
it is essential to start planning our future.
And on this specific aspect, I'd
like to address myself particularly to parents. You are the first who must
raise your children giving them a certainty that a future does exist, and so it
must be planned and considered. Because just like everyone else on planet
Earth, since the very beginning you must start to build the foundations on
which to construct your future.
I've seen far to many people
giving up, thinking there was no future for their kids, that they would never
reach a certain age. But I believe that this is something you can say for any
individual, because no one has the certainty of what's going to happen
tomorrow. Abandoning every hope, convinced that there is no future for DMD
patients, would be like stopping to drink and eat, because eventually life is
going to end and nothing can change that. Whereas life must be planned, dreams
must be pursued, and human relations must be cherished, no matter what. Because
otherwise, at the age of twenty, you find yourself with no passions, no
interests, no love: and so, you don't have a present.
I owe my parents the fact that
I've never felt different: so, as they did, allow your children to take risks,
to fail sometimes, to savour life in every aspect good or bad. You'll see the
results, and your kids will be grateful. Just remember that first we must
realize that we're normal and we can have a full life, than we can show it to
the world. You cannot live your life hoping in a miracle, in a prodigious
remedy that is going to fix everything.
In this last few years, research has taken a giant leap forward,
trials on men has started, showing that maybe a cure is not so far away. But
what would happen if you spent your whole life just waiting for a cure that
will finally allow you to live what society calls "a normal life", it
the treatment doesn't reach you in good time? You would have lost a life just
waiting, not living. You must become aware of the fact that you can live a
full, happy, satisfactory and meaningful life, that maybe the our disease isn't
all bad after all.
We must try and embrace our
condition, and then we can start to see upsides. Believe me, they are just as
many as the downsides. As my friend Pat Moeschen likes to say "Membership
has its privileges". And so, we have reserved parking, we don't have to
queue at amusement parks, movie tickets are less expensive. In my country,
people think twice before insulting you to your face. And if they do so, we can
"wheel" them down! And, in a relationship, a disabled person has the
absolute certainty that the person with whom he's involved, really loves him
for what he is.
Once we have learned that our
disability it's not an obstacle in the pursuit of happiness, if the cure were
to arrive, it would still be great. But if this weren't happen, it would not be
a problem. Because we had understood that we are, and always be, the makers of our
future.
Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy.
