My Child is Ill Archives 2010

j  ULTIMATE PROTECTION by Joanne Green I monitor the foods he eats,  That he will grow up strong.   I guide his moral development By teaching right from wrong.   I dress him warm on colder days,  And of course we immunize.   I teach him rules of safety to  Ensure his choice is wise.     If only I could hold a shield  To turn all hurts away  I'd stand a martyr's vigilance And protect him night and day!  But there comes a time when it no longer Does him any good  That I continue to hold the shield That he more appropriately should.    And that becomes especially true When peer relations start;  When hurts don't hurt his body so much As they truly hurt his heart.   I could protect him - hold the shield - Turn slandering others away  Or I could pass the shield to him To keep the darts at bay.    When comments hurt my little boy I die a bit inside.   But when I see him face his pain I understand with pride.  Ultimately the battle is his And he will learn to deal  With ugly words and painful wounds That he alone must heal.  I want always to protect him, And I know I always will,   But the best way to protect him  Is to provide him with that skill. http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/ Moms, I know you feel every ache your child feels when they are teased because of physical or mental illness and you want to shield them from all the hurt, but it won't be possible to do so. As the poem says, as the child grows you need to help your child develop positive ways to handle negative comments. When they are young, it's hard to imagine them being an adult, but that day will come and they will have to stand on their own two feet. I've been there. I know. It is so important to allow them to make their own decisions, handle their own problems, and give them independence, according to what is appropriate for their age. You can stand behind them, encouraging and teaching, but if you settle all their problems for them through childhood they will never learn to function independently as an adult. I realize there may be illnesses where they will constantly need assistance, but within the ability of the child, help them as much as you can to "stand on their own two feet." --Pat  . Exceedingly Abundantly by Simon Harris God, please use Kelsey to bring glory to your Name. We know the odds are against us, but we trust in You. Please use our daughter as a living example of Your power to heal, that all may glorify You as the Great God of Heaven. That was my prayer when we first learned that our beautiful daughter, Kelsey, had an aggressive brain tumor in the worst possible location. We learned that less than 5% of the children who get this tumor survive longer than 14 months, BUT we also knew that our God was more than capable of healing her. I repeated this prayer for months, but somewhere along the way, I stopped praying that particular prayer, not because I had given up or lost hope—my prayer simply changed. Not until April 10, 2009 as we were leaving the funeral home to go to the cemetery to bury the “tent” our daughter had occupied for 16 years and 28 days did I realized that God had answered my prayer in accordance with Ephesians 3:20 and had done so in an “exceedingly abundant” way. While I was praying that my daughter would be a living example of His power to heal, He was using her as an everlasting example of His power to save. Where I prayed for God to be glorified as the God of all healing, He has shown Himself to be the Great God of salvation. It was His will to use Kelsey in a way that went far beyond anything I could have ever comprehended. Unanswered or…Answered – ? In a time like this some might question God, wondering why He didn’t answer the prayers of so many who fervently brought Kelsey’s name before His throne in their daily petitions, but we must realize that He did hear our prayers and He did what He always does. He answered them according to His will. As always, His thoughts are higher than our thoughts and His ways higher than our ways (Isa.55:8-9). What God did for Kelsey was so much better than what I was asking Him to do. If God had answered my prayer according to my will, Kelsey would still have had a broken body. The tumor had damaged the nerves that controlled the left side of her body and the right side of her face. Even in a “best case scenario” she would still have had those limitations. But God dealt with her broken body by removing the corruptible so that she could put on incorruption (2 Cor.4:16-5:4). He set aside the temporary so she could put on the perfect and permanent. God’s answer to my prayer was “exceedingly abundantly” above what I could have thought in that He removed all her suffering. Too often we think about the suffering of a cancer patient only in terms of physical pain, but pain was the least of Kelsey’s suffering. Her greatest suffering was simply not being about to live like a normal sixteen-year-old girl. God removed all that, so that she is now in a place where suffering does not exist (Rev.21:4). It’s not that He just removed the suffering of cancer, but she will never face the suffering that comes from living in a world filled with sin and heartache. A Bigger Perspective—For Her, For Me, For You It’s natural to think about the things Kelsey will miss out on, but my friends, we are the one’s missing out! Romans 8:18-25 makes it clear that we are the ones groaning to be with the Lord. Think about this (only if you’re over thirty!), would you really want to be sixteen again, knowing you’d have to live through the pain and sadness all over again? God’s answer was merciful in that He removed her fears. Not until the week before Kelsey died did she confess that she had some fears about what she was facing. My initial reaction was to assure her that I understood why she was scared, but also to reassure her that she was going to a place where she would never be afraid again—forever! Most of us would admit to having fears as we contemplate that ultimate test of our faith. But imagine facing it at sixteen. While I could only offer words of comfort, God was able to provide true comfort. Notice what Jesus said about the time of Lazarus’ death in Luke 16:22. “So it was that the beggar died, and was carried by the angels to Abraham’s bosom…” There may be points to argue in this passage, but one thing is for sure, God gives comfort to His children at the very moment of their departure. God’s answer to my petition was also better for me as well. First, He has removed a major source for worry from my life. Almost as soon as Kelsey was diagnosed my wife said to me, “We are going to be dealing with this for the rest of her life.” Had God answered my prayer according to my will, five, ten, and even twenty years from now, I would still be worrying about Kelsey. Thanks be to God I will never worry about Kelsey again. She had committed herself to Him, and He never disappoints (2 Tim.1:12). Second, and more importantly, throughout this trial I have gained a greater spiritual focus. My eyes have been opened to what is really important, and it cannot be seen with eyes of flesh. Jesus warned us about not having a spiritual focus in Matthew 6:19-21. He told us that those who lay up treasure on the earth are always disappointed, but those who set their sights on heaven are never let down. It has been rightly said that this life isn’t about this life. It is about preparing for the next. God has certainly shown this to me. God’s answer was also better for everyone else who can see this shining example of His glory and power that goes beyond what we can ask or think. He has given us yet another reason to praise Him! That should be our reaction when we see Him answer our prayers in an exceedingly abundant fashion (Eph.3:21). He has again shown Himself to be trustworthy. In Kelsey’s life, and her death, we have seen a wonderful illustration that all things do work together for good to those who love God (Rom.8:28), and I do not believe He is finished showing us all the good that He is working! A Small Man and a Big God In all of this, God has given us yet another lesson on why it is so wise to serve Him. We often talk about why it is unwise to rebel against God, but there is good reason to serve Him. “If God is for us, who can be against us? Who shall bring a charge against God’s elect? It is God who justifies… Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord (vv.31-39). That is reason to serve God with every fiber of your being! I started this journey as a small man looking for a small favor from a big God. What I got was an answer that was bigger than anything I could have imagined from a God who is even more awesome than I ever knew! I never asked, “Why Kelsey? and Why me?” Now, looking back, I know why. God was using Kelsey to bring glory to His Name. When I was thinking about God using Kelsey as a living example of His power to heal, He was using her as an everlasting illustration of His power to save. For that I simply say, “Praise God!” http://www.biblical-insights.com ,  Planning Birthday Parties for Your Special Needs Child Planning a birthday party for a child with special health care needs can pose some interesting challenges, such as finding activities that can be played with other non-delayed children. To help with your next partyplanning venture, here are a few helpful tips: Decorate wheelchairs and/or mobility devices. Some children feel inhibited to play with children in wheelchairs or other mobility aids because the devices sometimes look a little scary. Decorating the wheelchair with fun streamers, ribbons or even wrapping paper can take the focus off the wheelchair and onto your child. Decorate the rest of the house with colorful balloons, streamers and such. Color is stimulating for children with special needs. Plan games that can be played hand over hand. Children with minimal motor function can have difficulty playing even the simpliest of games. Activities like a bean bag toss can be enjoyed by all, and other children can help your special-needs child hold and throw the bean bags. Have a supply of bubbles on hand, or give out mini bubble makers as a party favor. Children of all ages and developmental levels enjoy bubbles. And, for children with fine motor issues, other children can blowbubbles toward your child that he/she then try to pop – or just enjoy watching. Create a pretend band. What child doesn’t enjoy music? If you don’t have any child-size instruments on hand, grab some old pots, pans and utensils from the kitchen and let the children tap away. For added fun, you can create your own musical instruments from items you have around the house, such as old milk containers. Ideas for homemade musical instruments can be found at http://familycrafts.about.com/cs/musicalcrafts/. Have some craft supplies on hand. Craft projects where parents can help make for a fun afternoon. The kids can make picture frames for Polaroid or digital prints,or they can finger paint or make hand prints. Younger children could paint with puddings - then eat it after! Plan a themed party, such as a safari/jungle party. Kids can bring their own stuffed animal or make masks to wear - both would make for very cute pictures! Another fun idea is a silly hat theme. If you're searching for additonal party or fun craft ideas visit the Family Fun website (http://familyfun.go.com/parties/).  By Juli Bick & Julie Doyle  www.cincinattichildren.org .Leukemia and Me by Joan Fleitas, Ed.D., R.N. Once upon a scary time, Not very long ago. I had a strange thing happen And I thought you'd like to know. I've divided into three parts This little story rhyme. I hope that you'll enjoy it And be glad you spent the time. Part 1 There's a tiny world inside my bones. I learned of it one day, When some bullies came to visit And decided  they would stay. Before they came, this little world, Was happy as could be, With platelet cells and red blood cells  And white ones having tea. These little cells inside my bones Grew up and worked each day. They traveled in my blood stream, Making sure I felt OK. The white blood cells were body-guards, Protecting me from germs. They used to know some special tricks That made invaders squirm. The red blood cells were round and strong, And carried on their backs, The oxygen my body needs To play and to learn facts. The platelet cells were sticky friends, In charge of making clots. I’d cut my hand or scrape my arm, They’d make the bleeding stop. Well that’s the way it used to be Before the bullies came. I hadn’t met this inside world. I knew nobody’s name. Part 2 It was early in October  when I felt something was wrong. I had bruises, I was cranky, And I couldn't play for long. My body was so hot inside  I might have fried an egg. My mom and dad were worried, 'Cause I hurt all down my leg. They brought me to the doctor. They brought me to a lab. They brought me to the hospital. Where I was very sad. Before too long, the doctors Found the bullies in my bones. They were big and bold and bossy, Called my bones and blood their home. They sqeezed away the good cells, And munched up all their food. Like most bullies they weren't very smart, Though they were surely rude. You may think I was naughty. I thought I must be bad. To let these  bullies make me sick, I didn't understand. The doctor said don't worry. The nurse said I'm quite brave. They told me it just happens, Not because I don't behave. The doctor named these bullies. Called them all leukemia. Said that their outlandish features, Fit some clear criteria.  Part 3 I learned a bunch of new words Once leukemia appeared. Like chemo, blast and lymph gland. Don't they all sound awfully weird? I learned about the grand scheme To destroy these bully cells, And I took strong medications 'Til the bullies really yelled. These meds made me feel tired. They made my mouth feel raw. My hair covered the pillow, And left my head quite bald. I didn't like these feelings, But I figured this was true- If I felt bad, the bullies felt worse, And would melt into a goo. You might think that I'm different. You might think I have changed. But I'm the me I used to be, Just somewhat rearranged. You might think that leukemia, A cancer I was told, Is something you could catch from me As if it were a cold. But that's not true, it's not that smart, It doesn't have a clue. Traveling between us Is a trick it cannot do. There's more about this cancer- Something else that it can't do. It can't destroy my laughter, Or change me through and through. I'm better now than ever Since the bullies went away. My bones don't hurt, my hair's grown back, I feel great every day. So that's my bully story. It's pretty long but true. I'm glad you came to visit, I hope that you are, too. Use Your Amuse System to Boost Your Immune System Pat Gates This is a title of an article I saw online by Paul E. McGhee, Ph.D. I like the title as well as the meaning behind it. My son who was born with congenital heart defects always had a great sense of humor, from a young child until the present time. His positive outlook on life and being willing to laugh during difficult times has helped him and his family get through some really tough times. He has taught me so much about the benefits of laughter and this is something we need to keep in mind with our chronically ill children. They need to feel as normal as they can as much as they can and laughter is a distraction from the pain they must deal with.  Of course there are times when laughter is out of the question and our children need to trust us to understand their level of sadness and suffering and instead of laughter they may need a good sincere hug and encouragement. However, when timing is right, laughter can be a useful tool in directing the brain away from pain and sadness. While parents of ill children may not feel like laughing, the focus needs to be on their children; they can choose a time and place to let out the tears, but a continual display of fear and sadness will have a huge negative impact on the child. These children learn what they live from their parents. But we parents, can also learn from our children. We will learn patience, a positive outlook, and the desire to laugh and enjoy life; may God bless these dear children who become spiritual heroes at a very young age. At times, when our child is suffering, we may wonder why God doesn't stop the pain or sickness immediately and we may begin to get impatient with our heavenly Father. Our Lord and loving Father understands what is best for our child and how the healing inside and out needs time as is set by His laws of nature. Keep praying and trusting that the Lord hears your prayer and is answering your prayer in His time. I wrote the following in 1994 after watching a baby bird leave its nest.  -Pat .  . Observing a Baby Bird's First Flight Pat Gates When I looked up at the sycamore tree to see what was making such a commotion I saw a baby bird that had left its nest while learning to fly. His call to his mother was constant, unconcerned that I had stopped under the branch to observe. As I kept still, hoping to catch a glimpse of it fly, two birds flew in and rested on a branch not far from the baby. It was then that I first saw the mother bird; she had remained silent because of the danger of my presence, but when she saw the strange birds entering her baby's territory, she began squawking and flapping her wings and successfully scared off the intruders. I decided it was best if I backed away some, so I sat down a few feet from the tree, waiting and watching. The baby persisted in its calling until it became so fatigued it feel asleep. His resting was cut short, however, as the intruders had come back and mama started her sqawking again, warning the birds to back off. This resulted in the baby bird's franctic calls, once again. I suppose the mother bird felt like this was getting no where so she flew to a nearby tree. This was just too much for baby - after about 10 minutes of begging and pleading for its mother, he got the courage to fly to a higher branch. Mama was so pleased she called out to her baby, encouraging him to come, resulting in a serenade between the two. The mother bird soon became quiet, silently and patiently waiting for her baby's courage. With a longing for his mother and trust in her presence, the baby took flight and when he was united with his mother there were squawks of cheer and soon the peaceful silence of contentment and safety. At times we, like the baby bird, feel lost and alone. We call out to our heavenly Father, longing for His care. Sometimes our fear blinds us to His presence, but He reassures us, through His word, that He is near, always directing us to spiritual strength and hope. Our Father allows time for our courage and trust to develop and it is then when we gain patience and we learn to "wait on our Lord." He renews our strength and "we mount up with wings like eagles." our hope in our God gives us the sweet, peaceful contentment of coming home. Communicating with a Seriously Ill Child Parenting Strategies Be honest and reassuring in an age-appropriate way. You should always tell a child the truth when talking about his illness, but you may need to modify it in a way that fits your child. "Being honest doesn't mean kids need to know everything," says social worker Mary Mathews, director of family programs at Children's Memorial Hospital. "Every child should be given an explanation in a developmentally appropriate way. You can reassure your child that a parent or caregiver can handle this, without lying." Describe the illness using simple concepts. Pediatric oncologist Dr. Stewart Goldman recommends that parents explain the condition or procedure in terms children will understand. "You can let a child (with a brain tumor) know that she has a mass in her head and that's why she's having these headaches. It's not because she did something bad; it's the mass. And that's why she's having this surgery. You can reassure her that the doctor's going to give her medicine so it won't come back. And that's the absolute truth, but a little softened in an age-appropriate way. It's more effective than saying 'the prognosis is 44%.' " Talk to your doctor about who should deliver the news. If possible, the parents and the doctor should determine who should tell the child about his condition, because one of the reactions to bad news can be anger. "I would rather have the child be angry at the doctor, or angry at medicine, than to take that anger out on the parents," reports Dr. Goldman. "If the parents hear me say it to the child, they can pick up the pieces after I leave and work through it -- after the initial shock of whatever the news is." Adds social worker Mary Mathews, "Some parents may prefer to deliver the news themselves, or have to do so, due to logistics. Therefore, whenever possible, I recommend that parents and doctor confer before speaking with the child and decide what's most appropriate." Give parents and children time to ask the doctor questions. Kids don't want to be left in the dark and need to be part of the discussion about their care. You might tell your child that at times you will speak to the doctor privately, but that he will have his chance too. Dr. Goldman tells every pediatric patient, "There may be a time when I'm going to talk to your parents by themselves; it might be boring for you and they may want to talk privately. But I'll give you the same opportunity and I promise we'll summarize what I talked about." Most kids are very practical and they want practical information. In general, they will want to know: What is going to happen to me? What are you going to do to me? Where am I going to go? What will it feel like? Allow yourself and your child some time to accept this new reality. The first stage in facing a critical illness is acceptance. Give your family time to let this news soak in, and realize that kids will deal with it in different ways. Explains Dr. Goldman, "I tell people that you first need to accept that your life has changed, that you are faced with a catastrophic challenge, and that you need to acknowledge what you're up against." Then, get back to life as best you can and maintain routines. Once you've accepted the news, the hospital advises parents to move forward and maintain whatever routines are possible. The ability to do this will depend on the health and age of the child. Your child will need structure and normalcy at this stage, reports Mary Mathews, "An out-of -control sick child is awful for the parent, the child, and the relationship, and there won't be any joy. Even when there is an awful illness there can still be joy." Humor helps regain a sense of normalcy. Even life with critically ill children can be approached with humor. Dr. Goldman advises parents to tell children who are old enough to understand, "'You know you've got this tumor and for the next three weeks, go get every gift from people you can. … But at the end of three weeks, if your job is to pick up after the dog, you pick up after the dog; if your job is to make the bed, you make the bed; if you are going to school, you go to school … because we are doing this for you to be a normal person.' And that's my joking way of saying, 'This is bad, we realize it, we are all behind you.' But after that, kids want to be normal, that's what they want more than anything else … and we have to give them permission to be normal." Don't give up on maintaining behavior and responsibilities just because your child is ill. It's important to reinforce limits, to expect that your child will do her homework and fulfill her family duties if her health allows. It's even okay to discipline a critically ill child. "It may scare a child if she can suddenly get away with everything. There are also practical reasons to keep limits, because you need your child to respond to you," advises Mary Mathews. "Don't focus so much on the illness that you forget to parent your child. Children still need to have time-outs and get grounded. You don't want to trade in a potentially curable illness for an incurable character or personality." Take your cues from your child. Communicate but don't suffocate. Many children know what's going on inside their bodies without your telling them. According to Dr. Goldman, "You don't want to be the mother or father who says `How do you feel? How do you feel?' all the time, because that makes children crazy. But, after they have digested information, children do need an opportunity to talk about it." Mary Mathews recommends that parents "be ready when the child is ready, addressing the need when they are ready to hear it. But if all you talk about is illness, it becomes your child's identity." Don't get so consumed by your child's illness that everything else goes on hold. You will need to maintain a part of your identity that is not related to your child's illness. This can be challenging if you are also your child's nurse and teacher. But you still need to go out for dinner if you can, have babysitters and plan special activities with all your children. If you find your child's illness taking over all aspects of your life, it can help to go for counseling to learn how to manage the situation. Sick children can feel guilty if life stops because they are not well. Don't isolate your child from life unless your doctor tells you to. Don't give your child the impression that no one can touch or go near him because of his health. Let your in-laws and friends visit, and maintain as normal a life as possible. It's not necessary to over-protect your child from germs unless directed by your doctor. Dr. Goldman reminds parents that "if you throw the dog out of the house because you're afraid of germs, and if you don't let your child roll in the dirt, you'll have a spoiled, obnoxious kid." Be prepared for some regression. You can anticipate that each time a child goes through a new developmental stage, there may be some behavioral regression regarding the illness. As a result, including them in their treatment plans is essential. Stay connected with your other children and talk to them about how they feel. Siblings are deeply affected when a child is critically ill, and it's important to give them as much attention and understanding as possible. You also need to explain details to them and check in on how they're doing. Many siblings believe they may have caused another family member's illness -- and parents need to remind them that this is not true. "One time I had a kid let on that he always thought he caused his brother's tumor because he was really mad at him, and he wished something bad would happen to him," remembers Dr. Goldman. "This sibling needed to know that he didn't cause his brother's illness and he needed to know that he's still special." Sources: Dr. Stewart Goldman, Pediatric Oncologist Medical Director of Neuro-oncology Mary Mathews, Social Worker Director of Family Programs This information is not intended to be a substitute for professional medical advice. Please consult your health care provider about diagnosing or treating health care problems. www.pbs.org .  Be Aware of Symptoms Your Child May Not Be Able to Communicate Pat Gates Babies and young children with chronic illness may not be able to communicate how they are feeling. They may get fussy or lethargic if they don't feel like going out or socializing with others. Since becoming chronically ill I've wondered if I subjected my heart baby to too much stimulus at times when he wasn't feeling good or having enough energy. We don't need to overworry and become too protecive, but perhaps we need to watch for any warning signs such as physical changes or changes in their mood. Read about their illness and, if an adult experiences the same thing, find out how the illness makes them feel. It may be the same for your child.  Be aware of weather, especially the extremes of hot and cold. Heat may weaken as nerve conduction lessens in heart. It, along with extreme cold, will make the heart pump harder, so be careful with heart children.  Socializing is great for all children but if they are feeling badly or if they are in the hospital, shorten visits from others. When my son was older he told me visitors in the hospital were very tiring to him after his surgery when he was 5 years old. I never thought about that at the time as the visitors were mainly talking to me. Activity is always good as well, as long as the activity fits the child's functioning level. Remember babies and young children don't know how to say they are feeling weak or needing to go home. Let's be careful not to get so engrossed in our own activity that we ignore any physical signs of fatigue in our children, or their fussiness may be their way of saying they need the peace and quiet of home. Remember to be aware of your child's feelings, but be careful not to be so worried that you become overprotective. That could create an emotional handicap which your child does not need. Just try and be sensible; most of the time you'll get it right, sometimes you may not. It's very difficult to know 100% of the time. If we know the symptoms of our child's illness and put ourselves in their position (emotionally and physically) perhaps we can make better judgments.  One more thing: I wouldn't say, in front of the child, that you need to get him/her home because you are worried they are overdoing. The child doesn't want to become the reason for fun stopping and they don't want to be feel different from their friends. When you can, just say you have to go and if you need to say why, explain away from the child or call later and give an explanation.   Breathe In Breathe Out  By Joan Fleitas, Ed.D., R.N. Today I wheezed, today I sneezed,  today I learned a lesson. That breathing in and out each day Is really quite a blessing. Some tubes connect my mouth to my lungs,  And at times they swell up like balloons. And when they do, the air squeeks through, So my breathing appears out of tune. This swelling occurs when I pat the dog,  Or run out in the cold. When grass is cut, or leaves are raked, Or when there's lots of mold. I’m absent when the tubes swell tight. Some say I'm playing hooky, But when breathing is a struggle, I can't even eat a cookie. I've learned what I've got is called asthma. It's a good thing for me that I'm bright. I test my breathing at the start of each day, And avoid things that make the tubes tight. The dog sleeps in the basement. I keep my stuffed toys clean. No one's allowed to smoke inside, Hope you don't think that's mean. Sometimes no matter what I do The tubes swell anyhow, But I have tricks tucked up my sleeve. I'll share some with you now. I puff special medicine into my mouth With a nebulizer gadget. It works to open up the tubes. It really is like magic. Before I play some basketball  Or run out in the rain, I puff a different medicine. Then I can join the game. I don't eat many junk foods, And I try hard not to whine. These tricks help me stay healthy, So most times I'm just fine. If breathing in and breathing out A zillion times each day, Is something you do without thinking a thought, Thank God for this gift when you pray. http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/

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