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Monday, October 20, 2014 "Welcome to Holland" by Emily Perl Kingsley Many people have seen this poem, but it's an incredible portrait of the feelings that go through a parent's mind when their child has a disability. "Welcome to Holland" by Emily Perl Kingsley “I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.” Posted by MiraclesforMiles at 11:47 AM No comments: Labels: Baby, Miles, Pregnancy, Spina Bifida Location: Phoenix, AZ, USA Wednesday, October 8, 2014 Ain't Nobody Got Time We just love to dance at our house. Weston 14 Months. For about the past year, I had an overwhelming feeling that difficult times were ahead. I was not sure why I felt that way or what it meant but I continually told my husband about these feelings. I told him life seems too breezy right now and it can’t stay that way. It’s sort of a morbid thought and I think we just both wrote it off to mom paranoia but I find it interesting now. I actually used to say, “Something bad is about to happen,” and that part was not true. Nothing bad has happened to us. Nothing has been taken away. A son is being given to us. Only wonderful things are about to happen. Though will difficult times be ahead? Yes, probably. But I know now that my feelings were wrong. I still think it was mom paranoia. I have had two visions since we got our diagnosis of Miles’ Spina Bifida. I’ve never had visions before and frankly I barely believed people when they told me they had one. I know the Holy Spirit touches us all differently but I never thought I would be touched in this way. My first vision was of Miles dancing. I couldn’t see whether he was standing or in a wheelchair or what he looked like. I simply knew it was him and I knew he was dancing. My second vision really made me think. I truly do not know if I was sleeping or awake when I had it. It felt like something in between. I was standing behind Jesus and I was afraid. Jesus was directly in front of me, fighting Satan with a sword. Satan attempted to get at me in every opening, but Jesus blocked every stab and defended me. He was winning the fight. Then I attempted to move away from Jesus and crept to his side. The farther away I went, the harder it was for Jesus to protect me. He was reaching with his sword, struggling to block each blow but Satan’s stabs were coming closer and closer to me. Christ was worried and saddened that I was just out of arm’s reached. I ran back to Him and felt safe again- protected and guarded from the stab of the enemy. That was a powerful vision. It applied to so many aspects of my life but the main reason I needed it was to see the fight Jesus is putting up for me and Miles every moment of the day. I need Him so much. In moments I think I don’t need God’s protection, I am vulnerable, weak and alone and He can’t help me. I have to stand behind my God. When I’m afraid to have Miles and sad for myself, I am inching away from God, separating myself for the unspeakable joy He is bestowing on me. The last month of processing the reality of Miles’s disability has been very much like this. I inch toward God and become so excited to meet my son. I have the “bring it on life!” mentality and I am unafraid. Then I inch away from Him and I’m paralyzed with the unknown. What if he is worse than we originally thought? What if something goes wrong in surgery? What if, what if? I believe this is part of a normal grieving process. There are those days where you get your breath back and think, Wow how far I have come! And sure enough, a couple days later you backslide into a special little place I’ve named “The Pit of Despair.” Yet the truth is, with every step forward and inch toward God, The Pit seems like a more distant place, a silly place really. Who on earth hangs out in The Pit? What was I doing there? There is a bright sunny sky outside of The Pit. I’m never going back there. Oh what did you say? The Pit is having an awesome party tonight? Sign me up, I could use a good party! And so it continues. Posted by MiraclesforMiles at 11:19 PM 1 comment: Labels: Baby, Miles, Pregnancy, Spina Bifida Location: Phoenix, AZ, USA Subscribe to: Posts (Atom)
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Zasvjetlite u plavom – 2. travanj, svjetski dan svjesnosti o autizmu Svjetski dan svjesnosti o autizmu Glavna skupština UN-a odabrala je za obilježavanje 2. travnja čime želi skrenuti pozornost javnosti diljem svijeta na sve veći problem ovoga složenog poremećaja koji se kod pojedinaca najčešće razvije u prve tri godine života i uglavnom traje do kraja života. Povodom svjetskog dana svjesnosti o autizmu donosimo vam prekrasnu i poučnu priču koja nama roditeljima djece s autizmom i drugim poteškocama u razvoju daje snagu i djeluje inspirativno. Priča je objavljivana više puta ali uvijek i nanovo djeluje motivirajuće. “Često su tražili da opišem kako je to odgajati dijete s poteškoćama – da bih time pomogla drugim ljudima, koji nemaju to jedinstveno iskustvo, da razumiju o čemu se radi. To je ovako…. Kada očekujete dijete to je kao da se spremate na neki prekrasan izlet – na primjer u Italiju. Kupite hrpu vodiča i napravite krasan plan. Koloseum. Michelangelov David. Gondole u Veneciji. Možda naučite koju talijansku frazu. Sve je to vrlo uzbudljivo. Nakon mjesec dana uzbudljivih priprema, stiže dan odlaska. Spremite torbe i krenete. Nekoliko sati kasnije, avion sleti. Dolazi stjuardesa i kaže: “Dobro došli u Nizozemsku!”. “Nizozemska?!?”, kažete vi. ”Što ja radim u Nizozemskoj? Platila sam za Italiju! Mislila sam da sam u Italiji. Cijeli život sam sanjala da dođem u Italiju.” Ali, došlo je do promjene u redu letenja. Sletjeli su u Nizozemskoj i sad morate tamo ostati. Važno je da vas nisu odveli na neko strašno mjesto, odurno, prljavo, puno pesticida, gladi i bolesti. To je samo jedno drugačije mjesto. Tako morate izaći i kupiti nove vodiče. I morate naučiti sasvim nov jezik. I srest ćete mnogo novih ljudi koje inače nikad ne biste sreli. To je samo drugačije mjesto. Ono je mirnije od Italije, manje blještavo nego Italija. I nakon što ste neko vrijeme tamo, zaustavite dah, pogledate oko sebe i počinjete primjećivati da Nizozemska ima vjetrenjače… i Nizozemska ima tulipane. Nizozemska ima čak Rembrandta. Ali svi koje znate dolaze i odlaze u Italiju… i hvale se kako su tamo proveli prekrasno vrijeme. I do kraja svog života govorit ćete: “Da, i ja sam tamo željela ići. To je ono što sam planirala.” I bol zbog toga neće nikad, nikad, nikad, nikad proći… jer je gubitak tog sna jedan jako, jako važan gubitak. Međutim…ako potrošite svoj život jadikujući što niste bili u Italiji, nećete nikada biti slobodni da uživate u jednoj vrlo osebujnoj, vrlo dražesnoj stvari… u Nizozemskoj.” Kredit: Dobro došli u Nizozemsku – Emily Perl Kingsley