Fwd: I like to share with you.

[Guest guest]

Parents... I was touched and felt like answering this parent (Ivette's) letter, (at bottom of mine).

I am constantly learning so much from ALL of you. Please do know that, this my drive, is also the product of YOUR love...

Thank you ALL for your support and LOVE...

Luz Marina Sementilli

Please answer to HijaCali@...

Dearest Ivette.

My name is Luz Marina Sementilli and I was deeply touched by your letter. By your love.

I know your son will be able to thank you in the near future.

I know he will!Even if let's say your son can't answer you with his lips, he WILL thank you in many, MANY, other different ways!

We have a son that was a vegetable until he was 2 years of age. He couldn't even lift an arm by himself! (No turning, no tossing, no grasping, no crawling!)

He has a rare syndrome and as you might know, a syndrome is a collection of symptoms, so, he has many, many, things and I will very "briefly" name you a few... He has autism, cerebral palsy, retardation, kidney problems (many operations to date, the next 3 kidney surgical procedures will start this November 29th!), he also has eye problems, he has tunnel vision, and he also lives in a "flat" world that because of the many eye operations he has had. (He also lived for like 10 years of his life with an eye patch! (Alternating eyes every week.)

EVERY muscle in his eyes has been operated and so he also has no depth perception.

The doctors didn't know if he was going to be more than 4 feet tall, or ever going to be out of diapers, going to walk, or talk...

Today Thursday, November 18th 2004 our son will turn 20!

OF COURSE AFTER MANY, MANY, MANY years of THERAPIES, DIFFERENT "LESSONS", and LOVE, LOVE,, LOVE, (from us, from EVERYONE), Now, our son is not only walking but also running, not only does he talk, but, he is also bilingual! (I am Colombian, my husband is American.) Our son is now 6 feet tall! And... He's been out of diapers since he was about 4!

It has not been easy. (It is not always rainbows and butterflies!)

But... We are very positive people and you cannot even begin to imagine how much "we" as a family, as "HUMAN BEINGS," have accomplished by having the LOVE that only a person like this can bring!

These children DO CHANGE "OUR" LIVES!

And they change them for the better.

I used to practice Psychology (For Creedmore State Hospital in New York, which is the biggest for the mental field in that BIG apple.)

After our son was born (he is the second of two boys, the older being "gifted"), I had to leave work because of the many, MANY, doctors, therapists, and health professionals that our son had to see.

As understanding as anyone could be, I couldn't have a job where I could only go in "DROPS" and sometimes not even being able to go one day a week and even if I had the time, stressed out as I was, how could I get into people's heads (mostly schizophrenics), and counsel them? I was going to be a mental case myself! :-)

As a result of these "combinations," my life evolved in an unexpected way and so, I dedicated my life to our son, and actually now, to ANY human being that crosses my path:-) I was chosen Volunteer of the Year for Broward County, and this I assure you, all happened, in an indirect way, because of our son! MY life took a detour all because of this child that could not communicate with us, that through the years all he could do was recognize our voices, and could look up at his "mami" :-)

Our lives changed, because of this child that brought so much LOVE out of EVERYONE!

I am now the director for programs for people who are mentally or physically challenged (no matter what they might be diagnosed as), and so have many programs for the Special Populations. No, I don't get paid, I volunteer all my time. This all about because of this our "special" son! This child was a blessing for me, for us... You see, I get to live, I get to experience, I get to see SO much, SO, SO much in these programs, that I thank God, that this is the only thing"s" our son has!

There are so many parents struggling, simply trying to lift their child (or adult's) head up, just so that they can put a spoonful of food in their mouths. Some they tell me can;t even take a plain or long trips and so if there's a wedding one must stay, others wont even let people touch their hair. ( I am only dwelling on this that might sound negative but it is not exactly that way, the rewards are incredible! No one will have that love like ours, like the SINCERE love that only these kids can give us.) Kids being operated all through life without any breaks in between, all kinds of medicines, for the kids, and some even for the parents... I just see so much, and I absorb, and I try to be positive about it, and I learn... (OK, most of the time:-)

I say that I try and learn "most" of the time, because like I mentioned before, our son is again going to have to go trough more kidney surgeries and different surgical procedures, and so I, being the human being that I am, I started really feeling sorry for myself. It's so weird, I didn't worry so much about the outcome or what our son has that I feel is not in our power, but, I freaked out just thinking of the pain that he would be going through. (I have always have said, that my heart will never grow up!:-) Guess I couldn't protect him from feeling that pain, I couldn't help him in that department and so "again" I started going crazy (sad) myself -Plus I can't deal with separations and after my mom died it has been a little difficult for me. I accept death, but like I mentioned, MISSING that person is very difficult. The doctor called me Christmas Eve, yes! Christmas Eve last year (as in holy night peaceful night! -=while the rest of the world is celebrating a beautiful birth I am given my mother's death warrant! Well, I couldn't understand but (she died exactly a month later), back in October of this year I understood the reason for the holy eve's "announcement"! I was given my mother one more Christmas, and New Year! At least that's what I tell ,yself (and believe it!:-) Wel. we all grieve very different and so for me it's awful. So I have to concentrate on positive thoughts! They say that people that love much suffer much, well I LOVE much! :-). You think I remembered ALL those things about positivism I mentioned before about how other people were much worst of that us? How we must be positive?

I don't think so!

And so, I buried my self in my sorrows.

Drowning in a puddle of rain!

Until...

(There's always something that snaps me back to reality before I drive everyone else crazy:-) and thios time was our son's operatoin.

And so...

After listening to all that I was going through with our son (that looks so healthy on the outside), one of the parents from one of my programs wrote me a beautiful letter of support.

Of all the many beautiful, full of compassion, full of love things she said, strangely enough, the least noticeable sentence, was the one that brought me back to planet earth! And it read:

"At least you have your husband"!

"At least you have your husband"! ???? Hum...

You see, it's only her, her Down Syndrome, Diabetic daughter, sometimes no car, and a whole bunch of bills against the world!

She is a single mother!

There are a LOT of single parents with special needs children/adults out there.

Well, it took like about a day ffor that sentence to kick in, or for me to learn my lesson (again:-), for me to return to positiveness, for me to dwell on : "At least you have your husband"! , and so I snapped out of my sorry self and started thinking how FORTUNATE I WAS and how at least I had a husband that I could lean on for support, and so the rest of my craziness (I still can't sleep nights though:-), went to the back burner . (To be used in future times when I start my " I can't believe this is happening" phase:-) and, something, or someone makes me see how others do have it worse.

We do live in a different world. But it is a beautiful world...

Your child from what I see, has the most important thing in this world and that is your LOVE. I believe in the power of LOVE.

I hope that when you don't have a clue why things are happening, or why they don't happen, (as we all go through these periods through our life span), I really wish you can find (even if it takes YEARS), the BEAUTY in it all.

Remember:

Love, love, LOVE.

You WILL get it back!

God bless you Ivette.

I am sending you a big solidarity smile, along with the biggest HUG full of this my silly but, sincerest of "special" LOVE...

Luz Marina Sementilli

HijaCali@...

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Hi my name is Ivette, I have almost 5 years old boy, -Axel- his name is Axel! ,he is really smart and so handson, but he is autistic; he is doing well, slow but we can see a mayor progress, he can comunicate his needs and his wants and that make us happy. Step by step, day by day he is learning and my dream is one day he can be able to say -"thank you mamy for evething you taught me" because that will mean for me he finally recovery.