All the silver linings

Charlene eating spaghetti

Stories from the front

"Matt is two-and-a-half and has had a number of surgeries to correct heart problems. Just last week after his bath he looked in the mirror and started rubbing his chest with a towel. At first I didn't know what was wrong because I hardly notice the multiple scars all over him. I saw him look at his brother's chest and it was clear that he noticed there was nothing there. He continued his search for answers by pulling up his Dad's tee shirt and looking down my blouse. Not until then did I realize what was wrong with him. He looked so sad and started rubbing again.  All of a sudden his brother took one of his toy trains and started rubbing up and down his scar. He then told Matthew how lucky he was to have his own set of railroad tracks to play on. This brought my husband and I to tears. I guess we all have our own ways of looking at things." Dawn

"Five weeks before Bryan was born, I had my first ultrasound.  They saw something wrong with my baby.  I had to travel 800 miles to a medicalcenter that could do testing and let us know what we needed to do. The doctors there told us that babies like this die and that there was nothing they could do.  We actually had one doctor tell us that we were young and could have other kids!  Even when he was born alive, they insisted there was nothing they could do and that he would never grow or develop and we basically we should let him die.To make a long story short, my son is now 6 years old.  He has had 10 surgeries, spent 4 years on dialysis and recently I donated one of my kidneys to him.  He has been fed through a tube off and on for his entire life, but he's a happy little boy.  We still have to travel 800+miles for his care, but now the doctors he sees have hope for him. Bryan is behind in development, but he is learning things everyday.  His life is definitely worth living. Sometimes doctors are wrong and sometimes there are miracles.  I only wish that all children's stories turned out as well as Bryan's." Shelly

"The hardest thing was to be able to be with my 5 year old son as he was going into the operating room for correction of a serious cardiac defect.  I wanted so much to not cry but couldn't stop the tears.  He looked up at me with his sweet innocence and said 'Mommy, everything will be okay.' When he was finally released from the hospital he was given a boxed lunch. As we were travelling home (4 hours away) he asked me if he could have his lunch and  I said 'sure'.  He said 'Mommy what kind of sandwich is that?' and I said 'turkey'.  He again looked at me and said 'Mommy IT IS JUST LIKE THANKSGIVING.  We sure have a lot to be thankful for, don't we mommy?'  We CERTAINLY did!" Terry

"I have a nine year old son diagnosed with Chronic Intestinal Pseudo Obstruction.   Devon has had an ileostomy for the past five years which has affectionately been named "bum on my tum".  It has provided Devon a pain free management plan with little time commitment. Shortly after the placement of Devonís stoma we spent a marvelous family day at the beach.  When swimming time was over, the moms got busy getting the wee ones into dry clothing.  I held a large towel up around Devon which he repeatedly would drop.  In frustration, I said "Devon, you have to help mommy hold the towel", and he replied "why mommy, my bag covers my peter?!".   Needless to say, I thought to myself, Devon, it isn't your peter they're lookin at! I had the wrong attitude, Devon had the right one!   Devon viewed his ostomy as a "built-in cover up" , it was a "bonus".  As adults, we all need to take our lead from these children and see the world through their eyes. Their lives have been filled with invasive, painful and all encompassing regimens.  If we thought we were tired, imagine their feelings.  If we thought we were confused, imagine what must have gone through their little hearts and heads.  We had difficult choices to make as parents. In our case it was death or a device.  Did we really even have a choice?  What we did have was a chance to change a chartered course!!! Devon's ostomy has given us back our lives.  There is nothing he cannot do and I have the opportunity to watch my child thrive in all aspects of his life.  Regardless of what it brings,  I consider every day a true blessing." Moira

"I have two boys, Devin, 9yrs old and Levi, 4yrs old. They both have Hirschsprungs Disease. Devin has had countless  operations and procedures done to him. My heart breaks for him because he goes to school when he feels well, but he has very little control of his bowels. Each day is trying for him; through teasing or through odor secondary to the disease, he has to cope with so much. One of the hardest thing is trying to find the right answer to his questions. One time Devin looked up at me and said, "mom, please don't let them operate on me anymore because what happens, mom, if I don't wake up?" And then he looked up at me and said, "but I know God is watching over me and he does help the doctors do what the have to do to me, so that's O.K. mom". Boy that just made me melt. Those little hearts and minds  are great and glorious to have and to hold.......each day is special with Devin and Levi." Pam

"David needed a tracheotomy when he was two days old, and it stayed in place for the next 15 months.  Because he is both tall and thin, the stoma site is quite noticeable.  He has  developmental delays and speech problems, too, so he began school when he was three years old. He was excited about school, even though he was very shy and usually had to be encouraged to play in small groups.  After school, he came home, looked at me with his big blue eyes and said "Mommy, I am the only one in my room who has a belly button in his neck?  Am I that special?" I was so excited that he noticed the other children and felt special.  He is now 10 years old and continues to bless us with his comments about life." Nancy

"My 8 year old, Stevie, has finished a long year of chemotherapy for osteosarcoma, a type of bone cancer.  He has been really positive and brave and had decided, long ago, to keep on living. Part of his treatment was an above the knee amputation of his right leg to remove the tumor.  He learned how to use his new prosthetic very quickly, so we let him go visit his friend.  He came home and showed us his new "Seattle" foot.  The life-like big toe had been worn completely flat on one side. He had taken off his shoes to jump on his friend's trampoline, and then he went down their driveway on a skate board...on his belly.  Unknowingly, he had dragged his prosthetic foot down the drive!" Tom

"My son was born with bilateral hydronephrosis, and now has chronic renal failure.  During the last nine years we have learned that one of the most important things to remember is to have fun.  We have learned to organize our lives so that when possible, we take off and do just that!  We live our lives in a way that is normal for us, not the rest of the world. Sometimes that means just cutting loose and having fun the spur of a moment. Laughter has helped us through the roughest times.  That, and these three words, "I LOVE YOU!"  God has given us the ablility to take joy in small things and take nothing for granted.  Life's joys can only be appreciated when we compare them to life's sadnesses.  It has been a roller coaster ride, for sure. But who doesn't enjoy a rollercoaster?" Sharie

"Brianna is missing most of her rib cage. The ribs on her back are fused together, and don't come all the way around on the front.They end on the sides.The ones on the top come all the way around, but they are malformed and form bumpy points. Several weeks ago I was trying to get Brianna to eat oatmeal, and was telling her the healthy reasons, and finally just told her that oatmeal fills you up, and "sticks to your ribs". She put her spoon down, looked right at me and said, "BUT MOM, I DON'T HAVE RIBS, so where's MY oatmeal gonna stick??????" I laughed so hard...what she said was so true!!!". Jennie

"My nearly 5 year old son is a brain tumor surivor who was diagnosed at the age of one and had surgery as well as two years of chemotherapy.  When his little brother was first learning to walk, Josh was needing orthotics and a walker and at times a wheelchair to get around. One night he looked up at me and asked, "Can I be a man , and walk by myself?" I , of course , choking back tears said yes.  Then I asked him, "Is it hard to walk by yourself?" Nodding, he said , "It's hard." And then, "Who can help me?" "I'll help you," I promised. Then we talked about how he had been ill and just needed some extra time and exercise to get strong. I'm happy to say that now, one and a half years later, Joshua is walking , running and jumping, sometimes a bit wobbly but getting stronger bit by bit.  In fact, of all three of my children, he's the one who empties wastepaper baskets for me, clears the dishes after dinner, helps unpack groceries and tries to shovel snow. In that sense he is like a little man.  I'd like to add that the bedtime talk we had was the first, but I anticipate many as he grows in awareness of how his illness has affected his life.  We as parents have to continue the dialogue on many levels as our children grow. " Renee

"My daughter recently died as a result of complications from cystic fibrosis. Although she was on the lung transplant list, she didn't make it to transplant. When I look back at the short ten years we had her, I realize we let her live life to the fullest for as long as she could. She competed in rodeo, loved horses, and rode even when she needed an oxygen tank to be thrown over the saddle horn with her... the last day she was home before she was hospitalized for the last time, she rode her wonderful horse Dreamer. I will always be glad that she got to participate in life when I could have very easily been overprotective and said, "No, horses are just too dangerous." A wise doctor told us when our kids were diagnosed with CF to let them do what they could while they could do it...I'm glad we followed that advice...." Connie

"Early one morning my three year old son and I were waiting in the lobby of our building for my husband to pull the car around.  Once again we were on our way to the hospital to get Sage checked out after a head bump. He has a bleeding disorder so any head trauma can cause a brain bleed.  I was feeling sorry for myself, and feeling bad for my son, wondering if he would ever be able to just have a 'normal' childhood. Our neighbor came by and asked us if everything was okay. I told him what had happened. Sage was standing at the entrance to our building looking intently throughout the glass doors, out into the sunshine. Our neighbor crouched down next to him and asked him how he was.  Sage smiled, pointed out the door and said "That's my day out there." He knew he was going to the hospital, but his spirit was irrepressible. I felt a surge of hope and pride.  Who was I to sell him short? Sage had enough hope for the both of us." Rebecca

"My son Jared is 9 years old has Cerebral Palsy. He is in a wheelchair and is unable to walk unaided at all. Jared attends a local Primary school that facilitates those children with physical disabilities as well as those with none. There were only 6 children in wheelchairs at the time of this incident. Jared is very popular with his class mates and is included in the curriculum and activities as much as possible. A couple of years ago the school held a fancy dress ball at the end of the year for all students and their families. Jared went as a clown with a striped, multicoloured clown suit, multicoloured, curly haired wig, his face painted and a big red nose. Everyone was waiting outside until we were allowed to enter. All the kids were running around , giggling and talking. As we were waiting I heard these children whispering behind us, "who's the clown?", "does anyone know who that is?", "Isnt it a great costume." This continued for quite some time. Jared must have heard too, as he started laughing and his laugh is very distinctive to him. After some time one of Jared's friends came flying out from behind us, "Is that you Jared?"! At this point Jared really lost it, and was laughling uncontrollably and then all his many friends came milling around. What really blew me away was that, here was a child that they went to school with every day who was in his wheelchair and was near his parents and sisters who most of the kids knew. Yet all of his classmates could not work out who this clown was. It took his laugh for them to recognise him. THEY DID NOT SEE HIS WHEELCHAIR WHEN THEY SAW JARED. HE IS TOTALLY ACCEPTED FOR WHO HE IS BY HIS FRIENDS AND NOT HIS CONDITION. It was very humbling. Just as an extra note, over the years it is not children who can be discriminatory, but their parents. Children only repeat what they here their parents say. Otherwise children have total acceptance of those around them, this just showed me how much!" Marie

"Julian has Duchenne muscular dystrophy, and uses a wheelchair. Since the warm weather has finally come, he is choosing to "walk" to school on his own every day, as opposed to going by the bus. He left for school just a couple of minutes ahead of me this morning, and I started driving down High Street looking forward to being able to slow the car down,
and give him a final wave good-bye for the day. I did so, he waved back, and as I continued on I looked in my rear view mirror at him. He had a huge, beaming smile on this face,  and was kind of rocking himself gaily back and forth as he steered his wheelchair down High Street, and he was singing a song to himself, and smiling all at once. I looked at this incredibly beautiful person through the mirror and I transcended to the heavens ---- If the payoff for all of our work and grief was to just catch a glimpse of his happiness and joy enjoying a beautiful spring morning on his own, then it has all been worth it. He has been given to us as a gift with a very large pricetag ---- a prophet that has come to tell me how simple it is to celebrate a day." Julian's mom

"My five-year-old son Michael is always my inspiration. This year he had to have both legs serial-casted to stretch out the tendons on his heels. Although I was devastated at the reminder that his muscular dystrophy is progressing, Michael had a great attitude, so happy of our plans to have a cast party when we got home, where all his buddies could sign his casts. When the therapist finished the second cast, Michael hopped off the table and said, "Let me see if I can still run fast." (if you have a child with Duchenne, you will catch the irony!) He did his little run and said, "yup, I'm still fast!" Then he said, "Let me see if I can still jump." Although he's never been able to jump, he did his little one-foot hop and said, "not as high as usual, but it's still good." Then he headed to the therapy steps and said, "Let's see if I can walk steps." After trying, he said, "I can't, but I'll just crawl." No casts were going to change his joy for life!" Michael's mom

"My son Kevan is seven years old and due to a severe birth defect became a right, below-the-knee amputee at 11 months. This little guy has brought many tears to our eyes over the years, he has blamed me for letting the doctors do that to him, I have heard him crying in his bed and then he asks me if he will be complete when he is an angel, yet while these moments break my heart they are only a small part of Kevan.  When he was born my husband and I already had three girls so my husband was devastated that his only son would never be able  play sports with him or run or just do guy stuff.  He was so wrong! Kevan is a fast runner and he does everything the other kids at school fact I have to make sure teachers don't sideline him. I'll never forget the day the Ice Cream man drove by. Kevan had just gotten out of the pool and his leg was off. His sisters didn't wait for him, and were 3/4 of a block away with all the other neighbor kids, when I saw the most amazing thing. Kevan started to cry, but then got a determined, almost angry look on his face, and he hopped out the door and all the way up the street (with me trying to catch up to him). That was a real turning point for me. I now know that he will do whatever it takes to get what he wants and no one will ever leave him behind." Kevans' mom

<>"I have twin girls with nephrotic syndrome.  One of the girls presented with the disorder six months before the other.  She was  almost three at the time.  The twin who was not ill had a very hard time when her sister had to have all the bloodwork, I.V.s, poking and prodding,and was so upset sometimes, she would hide at the end of the bed and cry.  Over time she got used to being in hospital with her sister, which we had to do since the only children's hospital is five hours from our home.  The twins both got special attention, a ride in an airplane, special toys and other nice treats.  There was just one thing missing though.  When the second little girl came down with the disorder she had to tell everyone how excited she was.  Finally she was getting an I.V.too!!! Only the people  in the hospital could understand; only they could say 'you are a brave person to have that!!' She wasn't scared and was so proud of herelf...for the first time.  Finally she could be as privileged as her sister!  They are such a brave couple of kids, they help me cope and take it sometimes a little on the lighter side myself".Anita

"My son Bradley was born with congenital heart problems. One day I told him that Jesus lived in his heart. He looked up at me and said, "I can feel him goofing around in there!"

"My daughter Lauren is a very strong little girl (now 9-years-old... diagnosed with diabetes aty age 7). She never complains about her illness. But, every now and then, we both have a pity party. The other night she broke down crying, feeling sorry for herself. She asked, "Mom, before school starts next year, can we get me a new pancreas?" When she asked that question, I lost it! Kids shouldn't even have to know what a pancreas is...right? After a good cry, we both felt much better."  Tammy

"I have a son with ALL (Acute Lymphocytic Luekemia) He had to have an infuseaport, (which we simply call "port") placed in his chest to receive his chemotherapy. He was playing duck, duck, goose one day with other children and he said, 'pick me, pick me, I have a port.' "Dawn

"I have 6 year old twins, Bethany has Attention Deficit Hyperactivity Disorder and Breanna has cerebral palsy and is in a wheelchair, unable to move around on her own.  After one particularly hard day for Bethany, she said to me, she wished she was like her sister so she wouldn't get in trouble so much." Peggy

Have you found any silver linings lately? 

I've included an envelope for you to send them my way! 

Can't wait to hear about them!

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Joan Fleitas,Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNYy
Bronx, New York 10468

Last Updated: March 27, 2009