Friedreich's Ataxia Parents Group
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| Attitude
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars. By Maureen K. Higgins Most women become mothers 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 He observes, He instructs His angels to make
notes in a giant ledger. "Armstrong, Beth, son. Patron Saint,
Matthew." "Forest, Marjorie, daughter. Patron Saint,
Cecelia." "Rutledge, Carrie, twins. Patron Saint . . . give her
Gerard - he is 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 is so happy."
"Exactly" smiles God. "Could I give a handicapped child a Mother who
does not know laughter?
That would be cruel." "But does she have 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 will
handle it." "I watched her today. She has that sense of self and
independence that are 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 in 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, here is a woman whom I will bless
with a child less that 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, "Momma" for the first time,
she will be witness to a miracle and know it. When she describes a tree or a sunset
to her blind child, she will see it as a 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 doing my work as surely as she is
here by my side." "And what about HER Patron Saint?" asks the Angel,
his pen poised in mid-air. God smiles, "A mirror will suffice." Welcome
To Holland Matthew and 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.
THE STORY OF THE BUFFALO On the great plains of the Midwest, buffalo roam the fields with the cattle. Each live on these plains and eat from the same fields. There is, however, a big difference between the two. When storms come to these plains with thunder, lightening, and forceful winds, the cattle turn and run in the same direction the storm is going. Buffalo, though, turn, face the storm, and, with all their energy, run into the storm. Cattle spend all their time and energy running from a storm which they cannot outrun, prolonging their agony, their terror. Buffalo, however, by facing the storm, find themselves quickly passing through it. We have a choice in life with all the storms that we encounter: we can be like the cattle, spending our time and energy running from our trials, or we can be like the buffalo, facing life's trials, and passing quickly through them. Either way, trials in life are ours; it is how we face them that makes us who we are. A man found a cocoon of an emperor moth. He took it home so that he could watch the moth come out of the cocoon. On the day a small opening appeared, he sat and watched the moth for several hours as the moth struggled to force its body through that little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. It just seemed to be stuck. Then the man, in his kindness, decided to help the moth, so he took a pair of scissors and snipped off the remaining bit of the cocoon. The moth then emerged easily. But it had a swollen body and small, shriveled wings. The man continued to watch the moth because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the little moth spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly. What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the moth to get through the tiny opening were God's way of forcing fluid from the body of the moth into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Freedom and flight would only come after the struggle. By depriving the moth of a struggle, he deprived the moth of health. Sometimes struggles are exactly what we need in our life. If God allowed us to go through our life without any obstacles, He would cripple us. We would not be as strong as what we could have been. How true this is! How many times have we wanted to take the quick way out of struggles and difficulties, to take those scissors and snip off the remaining bits in an attempt to be free. We need to remember that our loving Father will never give us more than we can bear and through our trials and struggles we are strengthened as gold is refined in the fire. "May we never let the things we can't have, or don't have, or shouldn't have, spoil our enjoyment of the things we do have and can have." -author unknown There once was a King who offered a prize to the artist who would paint the best picture of peace. Many artists tried. The King looked at all the pictures, but there were only two he really liked and he had to choose between them. One picture was of a calm lake. The lake was a perfect mirror for peaceful towering mountains were all around it. Overhead was a blue sky with fluffy white clouds. All who saw this picture thought that it was a perfect picture of peace. The other picture had mountains too. But these were rugged and bare. Above was an angry sky from which rain fell, and in which lightening played. Down the side of the mountain tumbled a foaming waterfall. This did not look peaceful at all. But when the King looked, he saw behind the waterfall a tiny bush growing in a crack in the rock. In the bush a mother bird had built her nest. There, in the midst of the rush of angry water, sat the mother bird on her nest. Which picture do you think won the prize? The King chose the second picture. Do you
know why? "Because," explained the King, "peace does not mean to be in a
place where there is no noise, trouble, or hard work. Peace means to be in the midst
of all those things and still be calm in your heart. That's the real meaning of
peace." I dedicate this story to you FA Parents who are so diligent at providing a dry and safe nest for their children, "in the mist of angry water".--Sue Kittel An old cowboy said he had learned life's most important lessons from Hereford cows. All his life he had worked cattle ranches where winter storms took a heavy toll among the herds. Freezing rains whipped across the prairies. Howling, bitter winds piled snow into enormous drifts. Temperatures might drop quickly to below zero degrees. Flying ice cut into the flesh. In this maelstrom of nature's violence most cattle would turn their backs to the ice blasts and slowly drift downwind, mile upon mile. Finally, intercepted by a boundary fence, they would pile up against the barrier and die by the scores. But the Herefords acted differently. Cattle of this breed would instinctively head into the windward end of the range. There they would stand shoulder-to-shoulder facing the storm's blast, heads down against it's onslaught. "You always found the Herefords alive and well," said the cowboy. "I guess it's the greatest lesson I ever learned on the prairies- just face life's storms." from the book, Adversity by Elaine Cannon (1987) I think all of us have something in common with the Hereford cows. Thank-you all
for helping me "face the storm" of Friedreich's ataxia... Sue Kittel A Place for Tucker... a service dog story I am a teacher in an "alternate program" for students who, for many different reasons, have not been successful in the "regular" system. Last year one of our support staff decided to get involved in service dog training. She was given a black Labrador retriever puppy named Tucker. They went to many classes. He came to school with her every day. The students learned all about service dogs and many had a warm body to cuddle when they were feeling low. Trudy, the staff member, was beginning to dread the day when Tucker would graduate and go to the professional trainers and then off to help someone as a service dog. When I arrived back at school in September, Tucker was still there... Apparently he failed his service dog tests. Trudy took him to the airport program where dogs are trained to sniff drugs in luggage. He failed that too. So now he is our Alternate School dog - a failure like many of our kids perceive themselves - but a winner for our program because not only is he there to cuddle when someone is down - but he has a spirit and life story that many of them relate to. --Elaine Willis A few years ago, at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100 yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. Then they all turned around and went back. Every one of them! One girl with Down's Syndrome bent down and kissed him and said: "This will make it better." Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for several minutes. People who were there are still telling the story. Why? Because deep down we know this
one thing: What matters in this life is more than winning for ourselves. What matters in
this life is helping others win, even if it means slowing down and changing our course. There was a couple who used to go to England to shop in the beautiful stores. They both liked antiques and pottery and especially teacups. This was their twenty-fifth wedding anniversary. One day in this beautiful shop they saw a beautiful teacup. They said, "May we see that? We've never seen one quite so beautiful." As the lady handed it to them, suddenly the teacup spoke. "You don't understand," it said. "I haven't always been a teacup. There was a time when I was red and I was clay. My master took me and rolled me and patted me over and over and I yelled out, 'let me alone, but he only smiled, 'Not yet.' "Then I was placed on a spinning wheel," the teacup said, "and suddenly I was spun around and around and around. Stop it! I'm getting dizzy! I screamed. But the master only nodded and said, 'Not yet.' Then he put me in the oven. I never felt such heat. I wondered why he wanted to burn me, and I yelled and knocked at the door. I could see him through the opening and I could read his lips as He shook his head, 'Not yet.' Finally the door opened, he put me on the shelf, and I began to cool. 'There, that's better,' I said. And he brushed and painted me all over. The fumes were horrible. I thought I would gag. 'Stop it, stop it!' I cried. He only nodded, 'Not yet.' Then suddenly he put me back into the oven, not like the first one. This was twice as hot and I knew I would suffocate. I begged. I pleaded. I screamed. I cried. All the time I could see him through the opening nodding his head saying, 'Not yet.' Then I knew there wasn't any hope. I would never make it. I was ready to give up. But the door opened and he took me out and placed me on the shelf. One hour later he handed me a mirror and said, 'Look at yourself. And I did. I said, 'That's not me; that couldn't be me. It's beautiful. I'm beautiful. 'I want you to remember, then,' he said, 'I know it hurts to be rolled and patted, but if I had left you alone, you'd have dried up. I know it made you dizzy to spin around on the wheel, but if I had stopped, you would have crumbled. I knew it hurt and was hot and disagreeable in the oven, but if I hadn't put you there, you would have cracked. I know the fumes were bad when I brushed and painted you all over, but if I hadn't done that, you never would have hardened; you would not have had any color in your life. And if I hadn't put you back in that second oven, you wouldn't survive for very long because the hardness would not have held. Now you are a finished product. You are what I had in mind when I first began with you. --Author Unknown A water bearer in India had two large pots, each hung on each end of a pole which he carried across his neck. One of the pots had a crack in it, and while the other pot was perfect and always delivered a full portion of water at the end of the long walk from the stream to the master's house, the cracked pot arrived only half full. For a full two years this went on daily, with the bearer delivering only one and a half pots full of water in his master's house. Of course, the perfect pot was proud of its accomplishments, perfect to the end for which it was made. But the poor cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do. After two years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, and I want to apologize to you." "Why?" asked the bearer. "What are you ashamed of?" "I have been able, for these past two years, to deliver only half my load because this crack in my side causes water to leak out all the way back to your master's house. Because of my flaws, you have to do all of this work, and you don't get full value from your efforts," the pot said. The water bearer felt sorry for the old cracked pot, and in his compassion he said, "As we return to the master's house, I want you to notice the beautiful flowers along the path." Indeed, as they went up the hill, the old cracked pot took notice of the sun warming the beautiful wild flowers on the side of the path, and this cheered it some. But at the end of the trail, it still felt bad because it had leaked out half its load, and so again it apologized to the bearer for its failure. The bearer said to the pot, "Did you notice that there were flowers only on your side of your path, but not on the other pot's side? That's because I have always known about your flaw, and I took advantage of it. I planted flower seeds on your side of the path, and every day while we walk back from the stream, you've watered them. For two years I have been able to pick these beautiful flowers to decorate my master's table. Without you being just the way you are, he would not have this beauty to grace his house." Each of us has our own unique flaws. We are all cracked pots. But if we will allow it, the Lord will use our flaws to grace His Father's table. In God's great economy, nothing goes to waste. So as we seek ways to minister together, and as God calls you to the tasks He has appointed for you, don't be afraid of your flaws. Acknowledge them, and allow Him to take advantage of them, and you, too, can be the cause of beauty in His pathway. --author unknown The Day I Finally Cried |
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