Inspirational- One Mother's story of unconditional love

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Unconditional

http://specialchildren.about.com/library/weekly/aa071999.htm?terms=friendships

One Mother's story of unconditional love.

By Terrin Pelham, blessed with two equally wonderful sons.

From: A Parents View

Reprinted with permission

In the heart of a parent with a special child, love doesn't

recognize boundaries. 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 cannot 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 know 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, 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 then he does emphasize 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 that 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 guarantees. 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 advises 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.

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 you're 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 lose somewhere along the

trail of life. This little boy still has the ability to

love you without any of life's 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 then 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 as 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.

Doctors are not Gods 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 owner's 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 to much ask.

Terrin