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10 fingers and 10 perfect little toes, curly blonde locks and shiny little blue
eyes that touch a part of your soul and you know that your life would
never be the same without this perfect little gift from heaven. If
someone asked you to put into words what this little boy meant in your
life you would be unable because you can not put your very soul into
words.Suddenly the sound of shattering glass and the words echoing in your head and
your heart sinking to the floor as your doctor describes Klinefelter
syndrome and chromosomes and there you sit...with tears in your eyes
looking at your angel trying to see the difference from just 10 minutes
ago before you knew.You look at your doctor to see if there is any sign that he knows the
heart ache and fear that has just been handed to you. He smiles and
tells you that you can see a geneticist next week. He tells you that
even though XXY or Klinefelter Syndrome is the most common genetic
condition known to man it is still one of the most undiagnosed conditions
and because of that, it is one of the most misunderstood. What he can
tell you is that boys who are XXY may have learning disabilities, speech
and motor skill delay. These boys are often referred to as late bloomers
as they may walk or talk later than their peers. They may have
difficulty grasping the proper word when they need to and this may lead
to some frustration for them. He goes on to say that at puberty when the
other boys are developing secondary sexual characteristics your son may
be late in this also. He adds that your son may be tall and this with
sparse body and facial hair, he will likely have small testes that
remain small. He goes on to tell you that your son will probably
not be able to produce enough natural testosterone and will
need to have injections or take pills or wear patches in order to replace
the missing testosterone that his body needs. He tells you that your son
may experience breast tissue development but then he does take the time
to address the issue and he emphasizes that only some cases are
so noticeable that surgery is considered for removal. You sit, your chin
in your lap, listening carefully as he continues to explain the effects
of low testosterone and carefully reminds you that YOU have an early
diagnosis so your son can get testosterone when he needs it and avoid
much of what he has just told you.
Then just when you think the worst has past he lowers his voice and tells
you your son is most likely going to be sterile and unable to father
children of his own without medical intervention and that even
with intervention there are no guarentees. There is much more to say but
he wants you to get the rest of the information from the specialist,
the genetic counselor. He then advices you against going to read anything
at the library. You look at him and think to yourself......What an odd
prescription. Where do you go? What do you read? Yes! The library.
For days you read. Some of the stuff you read is horrific and some was
done with poor forethought as to what implications these studies would
create. In reading the information you quickly realize why your doctor
had just advised you not to do this. These studies are old, out of date and in
many cases, wrong, but you are unaware of this as of yet. Book in one
hand, shining little angel of a baby boy being held by the other. Every
so often you look up from this "stuff" that is supposed to helpful
medical data and you see the same shining little blue eyes and they still
touch your heart and soul. His smile still has the ability to make you
stop what your doing and try to remember what your life was like before
he came. Thinking of your OWN imperfections you wonder if this child
would love you the same way if he knew of them all. Of course he would
because this little angel has something that adults seem to loose
somewhere along the trail of life. This little boy still has the ability
to love you without any of lifes conditions. If you are blind he doesn't
care, if you have a disfigured face he smiles at you with love anyway for
he doesn't notice. There is nothing that could be wrong with you that
would change his love for you. With that fact clear in your mind you put
away the dusty medical book, kiss your little angel on his cheek and take
a deep breath. Suddenly you know what you are supposed to do.
In the short time this child has been in your heart he has taught you
more than any book could ever hope to. You now know what you must do.
You wake up the next morning and decide that you are going to give this
child back as much OF you and he has given TO you. He loves you fully
and without condition and you will offer that back. You hit the books
again this time you are looking for ways to help him and ways to show
him how much he means to you and your life. You sift through the old
and then dig your way to the new. You re-read the classic text book
data and you begin to question...."is this what will be or simply would
could be"? Where do you find your answer?
Your answer lies with the men who have lived this life. You begin
looking for others and before long you are in touch with dozens of men.
One thing stands out as a common bond with most of these men. They were
not diagnosed until much later. Some in puberty but most in adulthood.
You have a burning question. You ask "do you think your life would have
been any different if your parents had known THEN everything that we know
NOW?" and you hold your breath waiting for the answer. Almost all at
once the answer "yes".
You flash back to the text books in the library. Would those text cases
still be text cases if their parents had known what to do and how to
proceed? Would the outcome have been different if their doctors had known
what they were dealing with and how to treat and more importantly WHEN
to treat? Would the men have seen themselves differently if they knew
there were explanations for so many of their unanswered questions?
So now your job is clear. Listen to what these men are telling you
and allow their stories and experiences to help you, to help your
son. They tell you to love your son and to never doubt him. They
tell you to watch for your pitfalls and help your son build bridges to
get over them. They tell you to listen to your heart and your son more
and the educators and the system less. You realize that you will need
to educate the teachers if necessary. They remind you that no one will
fight harder for your son than you will. They tell you to educate your
doctor and everyone else who will play an important role in your son's
life so your son can grow up in a better place. They teach you to never
quit, to never give up and to always let your son know that you are on
his team no matter what. They tell you what a huge difference
testosterone would have made if given at puberty (for those who needed
it and choose that) based on the difference that it has made to them
when it finally was given. They teach you to never take one doctor's
opinion on the issue if think he is not doing your child justice.
Doctor's are not God's and the doctors of today need to look at the
information of TODAY and look to the future instead of the past. If
anyone were able to write an owners manual for your son to help his life
be a different life it is the men who have walked this path before him.
You listen to them and you take their wonderful insights to heart and
suddenly you realize that these men have given you a gift that no one
else ever could have. They have given you the ability to touch your
child's soul as he has touched yours and the ability to love this little
angel as unconditionally as he loves you.
A child with special needs simply needs you to love him or her as much
and as unconditionally as they will love you and love is not too much ask.Terrin
