Posebna lepota / Special beauty

Danes je rojstni dan mojega sina Julijana. Tisti, ki spremljate moj vsakdan na blogu Prav posebna mama, že veste, da je moj sin rojen s prirojeno okvaro možgan (Dandy-Walker malformacija). Danes je star štiri leta.

Ne hodi, ne sedi, ne prehranjuje se sam, niti glavice ne zmore prav dolgo zadržati v pokončnem položaju. Ne vzdrži očesnega kontakta, ne govori, ne zna izraziti, kaj si želi ali kaj ga moti. Popolnoma je odvisen od pomoči drugih.

Pa vendar je ta mali nebogljeni otrok moj največji učitelj. Samo s svojo prisotnostjo, samo s tem, da je tukaj, je spremenil moje življenje na bolje. Ne samo moje življenje, spremenil je tudi mene kot osebo.

 

Zakaj pišem vse to tukaj, na ta moj fotografski blog? Bi ne bilo bolj smiselno tega zapisati drugam?

 

Naj vam povem, zakaj … Ker je on tisti, ki mi na edinstven način kaže vse odtenke lepote življenja, tudi tiste, ki jih zapisujem s svojim fotoaparatom. Julijan je moj daleč najbolj potrpežljiv model. In hkrati največji izziv, saj od njega ne morem pričakovati poziranja. Enostavno sem prisiljena iz tega, kar mi je dano, potegniti največ. Uči me videti čarobnost same prisotnosti, tega, da nekdo samo je. In ta pristnost, nenarejenost je nekaj, kar najbolj obvladajo otroci. Odrasli prehitro pozabimo na to, ker želimo svetu predstaviti najboljšega sebe – ki pa ni vedno istoveten z nami.

 

Moj otrok zame ni otrok s posebnimi potrebami – moj otrok je poseben otrok. Iz njega sije posebna lepota. Tudi moja hči je lepotička in bo zlomila še mnogo fantovskih src, a lepota, ki obdaja otroke s posebnimi potrebami, je drugačna. To je lepota nedolžnosti, iskrenosti in pristnosti, ki pri vseh ostalih sčasoma zbledi ali se skrije ali preprosto pozabimo nanjo, ker imamo občutek, da je nismo vredni. Včasih imam občutek, da se v posebnih otrocih skrivajo majhni delčki angelskosti …

 

Nekaj te lepote bi želela deliti tudi z vami. V prihodnjih mesecih bom na tem blogu poleg ostalih fotografij objavljala tudi fotografije otrok s posebnimi potrebami. Rada bi pokazala čim več ljudem, da so naši posebneži čudoviti, da sijejo od znotraj navzven in da ni diagnoza tista, ki jih definira, ampak je to njihova POSEBNA LEPOTA. To je tudi naslov mojega projekta – nič kaj grozno inovativen, je čisto preprost, ampak zaobjame vse, kar želim sporočiti.

 

Projekt bom izvedla s pomočjo društva Vesele nogice, ki združuje starše otrok s cerebralno paralizo in zaostankom v razvoju na različnih področjih. Društvo opravlja čudovito delo in omogoča terapevtske obravnave mnogim otrokom, ki tega finančno niso zmožni, hkrati pa se trudijo izboljšati trenutno stanje strokovne pomoči v okviru javnega zdravstva.

 

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Svoj projekt začenjam s tistim posebnežem, ki ga sama najbolj poznam – s svojim sinom Julijanom.

 

Vse najboljše, moj mali lepotec!

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Today is my sons’s birthday. All of you, who follow my everyday on a blog Prav posebna mama (Very special mama), already know, that my son was born with congenital brain malfunction (Dandy-Walker malformation). Today Julian is four years old.

He can’t walk, he can’t sit, he can’t feed himself, he can’t even hold his head up for very long. He has no eye contact, he doesn’t speak, he can’t express what he wants neither what bothers him. He is absolutely dependent on us.

But still – that litlle helpless boy is my greatest teacher. Just with his presence, by being here, he has changed my life in to something better. He hasn’t changed just my life, he has changed me as a person.

Why am I writing all of this here, on my photo-blog? Wouldn’t it be more reasonable to write this on my everyday blog?

 

Let me tell you why … Because he is the one, that shows me – in his unique way – all the aspects of life’s beauty,  and by that also the ones I am trying to capture with my camera. Julian is by far the most patient model, but also the biggest challenge, because I can’t expect him to pose. I am simply forced to make the best of what I get. He shows me to see the enchantment of bare presence, of someone just being here. That authenticity is something that children master the best. We grown-ups keep on forgetting that, because we want to present the world our best self – that is not always identical with who we really are.

 My child is not a child with special needs – he is a SPECIAL child. There is special beauty shining out of him. My daughter is also one beautiful girl and she will for sure brake many many hearts, but beauty that surrounds children with special needs is different. It is the beauty of innocence, honesty and authenticity, that stays for life and doesn’t fade away with time or gets forgotten just because we have a sense that we are not worth it. Sometimes I get a feeling that there are small bits of angels hidden in our special children.

 

I want to share some of this beauty with you. In the following months I will be (besides other classical photographies) presenting photos of special children (or children with special needs). I would like to show to the world, that are our special children beautiful, that they shine inside out and that it is not their diagnose that defines them – it is their SPECIAL BEAUTY. That is also the headline of my project – it is not very innovative, it is simple and basic, but on the other way it tells everything I want to let people know.

The project will be performed within the organization Vesele nogice (Happy feet), that unites families and children with cerebral palsy and other physical and mental disabilities. The organization is doing magnificent job and provides therapeutic treatment for many children who can’t afford them. Organization Vesele nogice is at the same time seeking to improve the current state of technical assistance in the context of public health.

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I am beginning my project with the special boy I know the best – my son Julian.

 Happy Birthday, my beautiful little boy!

 

 

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5 Comments

  1. Urška…ne vem…res si posebna oseba, res te občudujem…vsakič znova, ko berem te tvoje prečudovite stavke na blogu, res se raznežim…res si PRAV POSEBNA MAMA!!!! Zaslužiš si še mnogo več kot ta naziv!!!!!!!

  2. Ta tvoja neverjetna energija, moč, ki jo premoreš, da vidiš lepoto…neverjetna si. Učiš nas videti in vztrajati. Spoštujem te in vedno znova me radostiš s svojimi zapisi. Želim ti čimveč lepih trenutkov v tem čudovitem projektu 🙂

  3. Draga Urška,

    hvala za Tvoj pogum in veselje do življenja. Pa seveda največja hvala, da z nami deliš to, kar si, to kar ste.
    Vedno znova ob prebiranju Tvojega vsakdana začutim, kako veličastno je življenje, če ga zares živiš. Če izkoristiš vsak trenutek, ki ti je dan.

    Veselim se novih objav tudi v pričujočem projektu, Julijanu pa iz srca vse najboljše in mnogo mnogo čudovitih dni, ki ga čakajo v krogu vas, ki ga imate tako zelo radi! 🙂

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