Jenny was already at birth a true flyweight with 2490g, Lisa and she was next to the prettiest child ever.

Somehow passed since the day she was born everything differently than the other children her age. Their favorite activity in the first year of life was the cry and cry. Of course, were the biggest cry-attacks into the evening- and night hours, and so sleep was an absolute shortage of. While other children practiced the first steps, they just discovered the Life ... no, Jenny does not crawling, the stomach is pushed backwards over the ground until they encountered an obstacle and got no further.

The Jenny with "something wrong" was very clear early on, But no matter which track we are going about it the doctors did not come to a common denominator. Also for, in daily abdominal pain, Suffered from constipation and diarrhea were the docs and no explanation as normal "three-month colic" could be the, what she was not worried stamped. So it was the end of every investigation Jenny have a developmental delay and I had to give her the time, it needs and take things as they are.

Even feeding each day was an ordeal, For the few things, they eat too was ready to be pureed had absolutely fine. Where this was not so, They fought tooth and nail against the eating or coughing so long until she almost threw up.

In kindergarten she started in a control group, where  However, very quickly noticed, that she was treated even by younger children because of their dainty appearance as a baby. So she went to one years in the Integrative Group and there is also starting their therapies such as speech therapy, Physiotherapy and occupational therapy. The logo has brought amazing results within a few months and as soon as Jenny talked like a waterfall and made it his own, repeating the phrases of the adults. And after three years of happy times nursery school then was the question in the space on which school they should go in the future. The advice of the teachers helped greatly in finding the appropriate school and so Jenny was then in the summer 2004 in a school for mentally handicapped children enrolled. The choice could not have been better. Not only, that Jenny has been there from day one felt very comfortable, but also the teaching team was completely behind her even though we still had no diagnosis.

In the spring 2005 was once again a visit to Lisa's specialty physicians in Mainz on the program. And after a great Hello and some specific questions to Lisa then came the big key moment. The professor asked if I had any other questions or requests and spontaneously I said, if he could look at my times, Jenny and described our situation in terse sentences. Again, I saw only pure question marks over the heads of absolute professionals, fell to the sentence: "I have a friend brought back from the U.S., View the time, this clinic was. Perhaps he has an idea. "Said, done. Prof. Stevenson entered the room and looked at my Jenny. He grabbed her hair, grabbed her neck and looked in both their shoulders and their facial shape in exactly. The whole lasted about 3-4 Minutes and then he looked at his colleagues and said,:"It's clear. She has the Williams-Beuren syndrome. "A murmur went through the room and it was recognized in every face the big" aha moment "and it was only a" yes ", clear. ... We saw that not rather!"Listening to.

Out of sheer gratitude and joy I would have liked this professor made in the arm, we finally had a diagnosis!

And with that understanding and the understanding of why things are started when Jenny just different. The key points in WBS are children, that they have no spatial-mathematical understanding, But this are in the musical field of foreign language and true masters. You can not organize themselves and have large deficits in motor function. So Jenny washes her face, for example, only with the fingertips, because it has no feel for how to use a hand as a whole. Every day is different with her. Times can they run up the stairs like everyone else, and then again they do need to lead by the hand. My eating habits are trained to date, so that their diet is as varied, Nevertheless one has to eat the serving and cut into bite-size pieces.

Jenny is a very open girl, just like all WBS-children. They really like each person, and unfortunately would not recognize if things are not well disposed to her. Therefore, it is a top priority to keep them in mind and to stay away from her injury.

A brief description of Jenny's idiosyncrasies:

-She likes loud music, but other loud noises to drive them into the flight (the vacuum cleaner is its enemy)

-They learn songs (See also) is extremely fast heart, and they are quickly bored her so much

-She does not own and has no imagination to make their leisure time (unless watching TV is allowed)

-She eats very few vegetables- or fruits (they are downright disgusted before), she would prefer to eat only meat

-She likes things, rotating (currently prefer skirts and dresses)

-Your moods change by the minute, she was just a real sunshine so the next moment it turns into a Tasmanian Devil

-She loves her little sister, but only if Lisa has good humor and is quiet

-You may remember unimportant things, the years are behind you (Which Lolli has sucked them as we 5 Have visited years earlier relationship), but where are the glasses in the cupboard she forgets almost daily.

-She thinks she prefers to adult and could sit for hours listening quietly and

-She is asked a question she looks at me or her subject searching and reading literally at the facial expressions of their counterparts from what is expected of her answer

The prognosis of the specialist is, that Jenny will be more than 146cm tall and will have completed at least one years puberty. At the booth, they will at that point is, it will remain, further development is no longer expected. Writing, arithmetic, and they will never learn, if they can write their names correctly at some point this is a huge step for them. Among the WBS-children, she is one of the very best in the language area, But in the field of action and self-organization is one of the weakest and it is not expected to, that the ever changing. A separate dwelling is Jenny can relate and it was never advised me, that they should move into a supervised dorm when the time has come. But until then, we have fortunately not much time

But the bottom line is, I can only say as a mom, Jenny is also something very special for me and I would not otherwise have. For me, Jenny and Lisa are the most amazing kids in the world!

For more information on the Williams-Beuren syndrome please can extract the following page: www.w-b-s.de

UPDATE vom 04.11.2011

Even a scant six years later, Jenny has the full control of puberty, but usually the other way around ...

On 30. September it was 14 Years old and for the first time was at a teenage party! I looked at Jenny until then when my little girl, I was taught that day but suddenly a better. Her friends came and were suddenly 4 .. Teenager in the hallway and my little Jenny was in the middle of it greeted with a kiss on the cheek and there was:"So Sweet, how are you you?"That does not immediately and the next sentence as" your parents are so nervous?"Came, was all they were ... all around to much larger, but still she belonged and was equal to all. There, that was the moment where I said goodbye and thought of my little girl's name was the big girl welcome. Still .. a funny feeling it was. Just because Jenny has WBS, does not do so, dass Sie Sie sich nicht weiter entwickelt ... tut Eben dies in ihrem eigenen Tempo und manchmal Eben Nur nicht sehr langsam, but now and then rapidly.

At the last visit to the pediatrician last week Jenny was now 148cm tall and 37kg heavy, to whether there is still one or two centimeters of the, remains to be seen.

Update from 25.6.2011

Jenny has now become a real teenager, with all that implies ... she loves me, They find me really annoying and she chats with her friends on Facebook, Skype and ICQ ...

Its openness towards other people has something left after, what it showed on the one, that they had difficulties in starting the new school, which I never expected, and secondly that they are the only times people just look at all. But who is she now smiles and takes it as it is just so, she closes immediately in her heart.

The change of school has been good for her and she is learning things, you would not have believed it. Their homework, they grumble and complain and not on good days, she writes almost flawlessly ... but at so-called bad days, you have to really take time to understand what she has written so. But everyone has good days and bad days.

What we predicted, the specialists have, has fully arrived we were told ..., that they would be comfortable from the teens and prefer to sit only with chocolate chips and watching TV would ... and what can I say? They were right! And so it's usually really difficult to persuade them to any activities. But fortunately for us, no child is Jenny, that defies clear announcements seriously ... of course she complains now and then, but in the end they followed what you say without a fight to break the fence.

And still it is so, that she feels most comfortable when she gets set clear lines where they can move themselves without having to decide.

Jenny is great and its very nature enriches our lives.

Update 10.11.2010

Time passes so quickly sometimes, I can hardly get behind her to also report how Jenny is designed. And that was the last time but very huge ... both positive and negative, of course, (typical teenager halt ...)

Meanwhile, Jennifer is 148cm tall and seems to have reached their final height, even if I did not of course say aloud, because she hopes to still be as large as I (naja, at 169cm tall is relative rather, insane but for much Jenny).

Their moodiness is more extreme in my eyes and I sometimes do not like out of my "feel-good rubber ball" suddenly a "miserable wretch" or a stubborn brat is. I'm just glad that it is not only me but also the people around them is so and so I often hear:"Jenny is so sweet, But how quickly your mood changes is really scary ... "Well, it is now time ...

Of course, they can be developed to at least in some areas, like a typical teen and she has the phone with her friends to a true passion, when they do not want to be disturbed ("I'm off to my room, to make phone calls in peace "–"Why not here phone calls last?“ –"You bother me there") and at which they no (voluntary) End by.

Even now when it comes to the Christmas season, it has made me realize, that it is for chocolate advent calendar with just too old and now it should which with Jewelry, Care products or other "women" are.

To her sister she has become a very cordial relationship, the finally nothing more to do with, I'm close (motto: Mama, Look what I am looking for a good girl ... I caress Lisa ... You see the???? I'm a good girl?), but simply that she likes Lisa. Unfortunately, their growing awareness also led, that she was aware, that Lisa irwill die at some stage, I had always tried to express her not face much. But she knows it, source whatsoever, and it tries to deal with it, but sometimes I can watch them here, Lisa looks very sad as she and her thoughts about you can literally read on their forehead.

Grief can deal with Jenny anyway very bad and as soon as the word "death" or something falls in the direction, she begins to cry and suddenly misses her grandmother very extreme, although this is long dead. These wounds heal, just not in her little soul ...

All in all, Jenny has become a little adult, both externally and internally. But many things she has still not learned yet and we do these things you simplify, such as. : Your digital clock shows only a 12-hour rhythm (with 15 or 18 Clock hands or they may just start anything), squeeze juice for the evening was an apple bought splitters, so that they can actively take part without losing the desire. There are only bought shoes with zipper or Velcro tie shoelaces ... works too rare and they totally frustrated. So why does it torment?

Jenny hears everything that tell what we so, because we have become accustomed, and said then more (if she blurted as always ...) "You have cauliflower leaves and ears", But recently came a series, which concerned a girl with WAS was ... well this girl heard all this and it was called "perfect pitch" and I think ... it sounds much nicer, or?

Update 15.03.10:

Jenny expressed the desire to write this diary for once allowed to, na as I say but: Nothing could be easier, but she had to (almost) Leave alone! Have fun reading:

"Jenny Halllomainane debts am e 5klase habe Frode 2geschzter 1kaze 2eltern mom undpapa echden12jeralt echhabedonaztag ferlezt knischbe opariat echhabe1aine Otes lisa ezt baaeei dad telefonirt 2krebz okay"

Update 26.10.2009:

Even though Jenny is now with her proud 12 Years, only very little of what she sees there on his own, but so are many things to scream funny. The following phrases, which I shall list them in future, are truly original in her mouth ! Have fun ...

– Ca. 2 Weeks after Jenny has turned himself in school, the knee:“Mama, Last night I came to the conclusion, that the pain is over in my knee. "

-Previously there was a small discussion was held over their bitchy kind ... 15 Minutes later, comes the following sentence:"This is intended only to this shit Pupsertät, I'm glad when the path is!”

–Morning at breakfast she looks at me radiantly:“Meine Mutter….(huh? as now? who now? I?)…because the inside of me is, finally gives rest! Which does not hurt me more " (ah okay ... her uterus ... phew ... all clear .. I tell her that the pain might come back again ...) "Oh man, for never to hear the????”

-In the morning I turn on the light in the nursery,Jenny to attract to the school: “Mama, guck mal if by the light turns on,One Can See,that it is light!” (huch .... oh horror .. I've missed some point? I watch in amazement ....) "Yes guck doch mal, if the light is on, you can see through the blind,that it is bright outside!”