Luke's Tuberous Sclerosis Page
Collection of Thoughts and Poems Related to Tuberous Sclerosis |
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A meeting was held quite far from earth "It's time again for another birth." Said the angels to the Lord above, "This special child will need much love." His progress may seem very slow Accomplishments he may not show And he'll require extra care From the folks he meets way down there. He may not run or laugh or play His thoughts may seem quite far away In many ways he won't adapt And he'll be known as handicapped. So let's be careful where he's sent We want his life to be content Please, Lord, find the parents who Will do a special job for you. They will not realize right away The leading role they're asked to play But with this child sent from above Come stronger faith and richer love. And soon they'll know the privelege given In caring for this gift from heaven Their precious charge, so meek and mild Is heaven's very special child By Edna Massimilla Most women become mother by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As her observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth; son; patron saint, Matthew. "Forrest, Marjorie; daughter; patron saint, Cecelia. "Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, " Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live her world and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it! When she describe a tree or a sunset to her blind child, she will see it as few people ever see my creations. "I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is here by my side." "And what about her patron saint?" asks the angel, pen poised in mid air. God smiles, "A mirror will suffice." Universal Press Syndicate Erma Bombeck At Wit's End 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 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. Taken from Children with Visual Impairments Edited by M. Cay Holbrook, Ph.D. Copywrite by Emily Perl Kingsley 1987 I humbly salute you, faithful, heavenly friend! I give you heartfelt thanks for all the love and goodness you show. At some future day I shall, with thanks more worthy than I can give repay your care for my child and before the whole heavenly court acknowledge our indebtedness to your guidance and protection. continue to watch over him provide for all his needs of body and soul. Pray, likewise for me, for his father and our whole family that we may all one day regoice in your blessed company. Amen I do not stand as a beacon light On a lofty mountain high To guide the world of men in flight As they travel through the sky. Yet a little light in a lowly place Can give a message of cheer, And bring a smile to a troubled face From love-light shining near. Hannah C. Ashby - Great Great Great Grandmother of Luke It's up to us to do our best To act, to think, to plan. Accept the task For which we ask, Then do the best we can. Don't be discouraged by steep paths. Just firmly set your will. But if you slip, Still hold your grip. You yet can climb the hill. When you have reached a vantage spot Just take a look around. To be secure You must be sure You stand on solid ground. You then can brace yourself once more To make the distant climb. But do not stop; Try for the top. It's surely worth your time. Unless you have the will to strive, The breaks won't come your way. Don't make a fuss. It's up to us, And has been, every day. Hannah Ashby - Great Great Great Grandmother of Luke condensed from the book by Gerda Klein a lovely little girl. She has brown eyes and dark brown hair. If her hair falls into her eyes she brushes it away. But her hand does not go straight to her forehead. Instead, it curves around like a flower first opening its petals. *Then* she brushes her hair out of her eyes. You see, Jenny is different. Different? Yes, different from most other little girls. But surely all people don't have to be alike, think alike, act alike, or look alike. To me, Jenny is like a blue rose. A *blue* rose? Have you ever seen a blue rose? There are white roses and pink roses and yellow roses, and of course lots of red roses. But *blue*? Every gardener would love to raise a blue rose. People would come from far away to see it. It would be rare and different and beautiful. Jenny is different, too. And so, in a way, she is like a blue rose. when Jenny first came home from the hospital--a pink baby, all cuddly and round-- she cried very often. She cried more than most babies. Why? Well, perhaps she saw different shadows that frightened her. Perhaps she heard sounds that were strange to her. When she was older, Jenny always stayed close to her mother and held on to her tightly. You know, when a kitten loses its tail it is said to gain sharper ears. It's true that a tail helps a kitten run faster. But a kitten without a tail hears better and can detect approaching footsteps long before other kittens do. Some people don't know about such a kitten's fine ears; they only see the lack of a tail. Some children are cruel and stare and taunt: "The kitten has no tail! The kitten has no tail!" Sometimes, Jenny would run up to her mother and clutch her tightly, for no apparent reason at all. At least, for none that we could see. And so we came to understand that Jenny's world was a little different, unknown to us, in some ways. We began to think that she was in a world in which we might not feel completely at home. To go there might, in a way, be like going to another planet. In a way, it's as if Jenny is standing behind a screen, a screen we cannot see. Maybe it has beautiful colors. Maybe the colors distract Jenny at times from paying attention when we talk to her. Or perhaps she listens to music we cannot hear. It is said that fish have a language and a music of their own, carried by the waves. Music we cannot hear because our ears are not fine enough. So Jenny might hear sounds we never hear. Maybe that is why she jumps up at times and goes into her awkward dance. I sometimes think Jenny is like a bird, a bird with very short wings. For such a bird, flying is hard: it takes more strength, more effort, more time. A bird with normal wings takes flying for granted, but a bird with short wings has to work much harder at learning. In a way, it has to be smarter. And so, therefore,, we have to understand how much Jenny has accomplished when she does learn something. But there is another Jenny. A Jenny who, on a stormy winter afternoon, sits in her little rocking chair alone and rocks, holding her doll in her arms. She is very troubled and puzzled, and she says, slowly, "Mommy, Sally says I'm retarded. What does that mean, Mommy? Retarded? The children say retarded, and laugh. Why do they laugh, Mommy?"< br> There are many things Jenny does not understand. And there are many things other people don't understand about Jenny: that Jenny is like a kitten without a tail; that Jenny hears a different music, that Jenny is like a bird with shorter wings, and has to be protected. Jenny is like a blue rose, delicate and lovely. And because there are so few blue roses, we don't know much about them. We only know that they have to be tended more carefully And loved more. MY ANGELSorry you have to go through all this drama I know soon you will go to a place that's safe The suffering will end and you will feel great. Baby, when you see the light You can stop this horrible fight All of this pain will end And your soul will begin to mend Don't worry about me, I'll be fine But keep in mind you will always be mine When the sun shines through the clouds I know you're saying you love me out loud Your spirit will live on through me Which I'm already sure you can see Even though my heart is breaking I know my pain you are taking I will miss you dearly when you are gone But I know you will help me along You will always remain in my heart Even when we have to part Your love has forever changed me So your spirit it can be set free You have given me strength to go on So fly Angel to your place beyond In heaven with God is where you belong And someday I will be along Baby we will be together again But I cannot tell you when In the meantime take my love Carry it with you when you go above Our love is like a rose Even though the flower dies, the memories will always remain close Baby when the time has come for you to go Take my heart, my love and everything you know Fly Angel above and beyond Because we will always have our bond I will love and miss you forever But remember, the ties we cannot sever So Angel, fly way up high And every time I think about you and miss you, I will know All I have to do is look up to the sky. KERRY J. MILLER You can also read Paige's story on the TSC Family Story Page. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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LUKE'S Tuberous Sclerosis LIFE STORY
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