Guest blog
Posted on: July 21, 2010
Normal is Never Easy
Ask any kid, sick or not, what is most important to them when it comes to going to school, what they wear or just about anything and they’ll say that they just want to fit in. It is extremely difficult to not go out of your way to treat a sick child with kid gloves by buying them anything they want, fulfilling their every wish and doing everything for them, but sometimes saying “no” is a good thing.
Feeling Guilty
As a parent, I can imagine how guilty you might feel, even though it is not your fault that your child is sick. But beating yourself up by constantly showering your child with gifts and catering to their every command sets the tone that they are different and can even be red flags that somethings wrong with them. Every action has a reaction and while it’s good to love on your child, that doesn’t mean they don’t need normalcy.
How to Say “I Love You”
A regular schedule and disciplining your child is ok and good for them. Go out of your way to make your child feel normal and shower them with love, instead of spoiling them with things and letting them get away with anything. Set up a chore list and spend time instead of dollars by playing games with your child or cooking together. Believe it or not, by making your child feel normal, you too will start to feel normal too. As hard as it seems and as tired as you may be, helping your kid feel like a kid is one of the best ways you can say “I love you”.
Bio: Alexis Bonari is a freelance writer and blog junkie. She is currently a resident education blogger and performs research surrounding
College Scholarships. In her spare time, she enjoys square-foot gardening, swimming, and avoiding her laptop.
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When You Want to Pray
Posted on: July 17, 2010
I wanted to let you know about a great website for daily prayers. You may have things going on in life especially when you have a child who is ill and Prayer may be what you need. However, you also may not think you have enough time to pray. Maybe you don’t know what to say or how to say it.
Prayables is a new website for just those times. You can sign up for a daily prayer to be sent to your in box. You may even ask specifically for the prayer warriors to pray for you, your child, or someone else you know in need.
The site supports all religious affiliations and view points focusing on the prayer rather than tagging one belief over another.
Check it out. It is fabulous and so helpful during the stressful times in your life when you need those Words to speak to your heart. http://prayables.com
Check out the site for great inspiration
Spina Bifida-
Posted on: June 26, 2010
Spina Bifida is a neural tube defect. That sounds very complicated, but what that means is the embryonic structure that will develop into the unborn baby’s brain and spinal cord has a defect. Most likely the spinal cord will not be totally enclosed.
Spina bifida may be very minor and almost undetected or it may be extremely obvious from the sac of tissue at the newborn baby’s back. Symptoms likewise maybe absent or they may be severe enough to cause paralysis, seizures, or bowel and bladder problems.
Many times these defects are detected during pregnancy and often some form of surgical treatment may be suggested soon after the baby is delivered.
Preparing yourself for what comes next is important. Follow these tips to make certain you understand what will happen next with your baby and your health.
1. Ask any questions you have and expect to get answers that you understand. If you are still confused about some aspect of your care or the status of your unborn child, ask again.
2. Take someone with you to all your appointments so you have two sets of ears. If you and a partner or friend listen together, it ensures that you are both hearing the same information.
3. List all of your medical history and the medications that you take. It is important for your physician to know if there is a history of neural tube defects in your family or if you have a history of other pregnancies that include this problem.
4. Eat a healthy diet and take the prescribed vitamins before and during your pregnancy.
5. Learn all that you can about what this means for your baby. Knowing and planning for the delivery, the post delivery treatments, and the prognosis, will help you prepare family members and siblings for the future.
The outcome for infants with Spina Bifida will depend on early interventions and the severity of the defect. Ask your health care provider about support groups, clinical trials,and community services in your area to assist you in finding the best treatment and support for your baby’s future.
Top a The Morning to You
Posted on: June 8, 2010
Children are our greatest asset and we need to nurture and love them, helping them to find all the gifts they have.
It is such fun realizing the gifts our children and grandchildren were born with and begin to use as they mature.
In this world where jobs are lost, money is always an issue, and for some of you health is poor, reach for the smile in your child’s face. In that smile is the hope for the future. Children have a knack for looking at the bright side and we can learn from that gift.
So today, look at the smile. Feel the blessing in just being. Take a deep breath and forget the pain for a minute, and be grateful.
And love.
Rates for cures up….
Posted on: June 6, 2010
Cancer is not a death sentence. Every day there are new and improved results from treatments and research is working hard to find cures.
Relay for Life walks are happening all over the country this summer and it goes along way to prove that treatments work. More and more survivors are making that survivors lap… kids, women, men, people of all ages with all kinds of cancer. This is fantastic news. Breast cancer for instance has a greater than 85 percent cure rate if caught early and Leukemia has almost a 95 percent rate of remission when treated early.
I am looking for kids who have won this fight, those who are doing well and can give advice to others. Do you know a child like that who we can present here as an inspiration to others just beginning their fight? Email me the information if you would like to see someone you know recognized for winning the battle over cancer.
Cancer is an ugly word…. one no parent wants to hear. I have cared for children from the age of 11 days old who have been diagnosed and treated for cancer. It happens and we cannot give up the research and the funding for finding cures for all childhood cancers. One day I want to see every child win and make that survivors lap in their hometown. Go Ben!
Visit www.lls.org for information on childhood cancers, blood cancers, and support for adults who have leukemia, lymphoma, or other blood related diseases.
Donate to the American Cancer Society in your community and visit your physician for your yearly check up for early detection screening. Remember, cancer does not have to be a death sentence, it can be just one chapter in your life.
Children get sick, and some of them get really really sick. After a diagnosis and the first few days or weeks of treatments, reality sets in for most parents and auto pilot goes on the fritz.
You now realize this is stressing you out. How do you cope with an illness and treatment plan that may last weeks, months, and even years?
In my new e-book 61 Tips for Coping When Your Child has Cancer I list 61 one helpful ideas that will ease your stress and increase your ability to cope during the trying times when your child is ill.
Tip 47 is a very simple concept but so often overlooked in the days of serious and uncertain illness. Plan for FUN. Even if you only can pack in 15 minutes of fun a day, in the middle of a serious illness and treatment plan, those fifteen minutes can be life-changing. Your child is still a child, regardless of the magnitude of the illness. Fun is an essential part of childhood, and yes, even fifteen minutes will make memories.
Scheduled fun does not have to be a play date with friends, an expensive day trip, or involve going somewhere or spending money.
Fun can be setting a timer and making silly faces to see who breaks down and laughs first. Fun can be making a paste out of koolaid powder and spiking the tips of your child’s hair… calling it a purple day or a green day. (Koolaid will wash out in 2-3 shampoos and is a non-toxic but it will stain your fingers so use plastic gloves.)
Fun can also be making a card for another child, even if you don’t know his or her name. Sending it to a local hospital pediatric department where it can be distributed to a child who may need encouragement is a way to put the focus on someone else who is also having a difficult time.
Fun can be playing with play dough, finger painting, playing with silly string, or doing a simple craft for a few minutes. It is time to sit and do an activity with your child totally unrelated to his or her illness and treatment.
Fun can also be sitting and watching cartoons for 15 minutes or a good movie. Playing guessing games, matching games, cards, or doing something with glue and colored paper can all be inexpensive ways to have fun.
Anything that can make you and your child smile or laugh for even a few minutes a day, is stress relief. Laughter lowers blood pressure, increases hormones that improve immunity, and exercises facial muscles.
No matter how hard your day is or how serious the situation, our Creator created laughter and smiling as a blessing. It is also a great way to share a few minutes of happiness with your child and it definitely makes memories.
Schedule some fun. Go ahead, really, Have a little fun today. It will make you smile.
Meet Lilly… my fictional character
Posted on: June 4, 2010
I have so many characters floating around in my head and all of them center around brave children who have big hearts and know how to have fun. They enjoy life and can laugh at themselves, and they embrace every day as a gift.
The character closest to my heart is Lilly Isabella Lane. I created her with the characteristics of several children that I have cared for over the years and who proved to show the bravery equal to that of soldiers fighting a different kind of war. These kids all fought the war of disease, and some of them won the battle.
Lilly is a nine-year old who has been diagnosed with Leukemia, a form of cancer in children. I created her spunk from the same spunk that I see real life kids express when dealing with this same real life disease. She wears silly hats, she loves horses, and of course she has a cat, a big, yellow, furry cat. Doesn’t she sound fun?
My question to parents and kids going through diagnosis, treatment, and healing from this childhood disease, can you relate to a fictional character if that character is going through the same things you have or does a story have to be about a real person to touch your heart?
My nursing experience has led me to believe that children need to read about fictional characters who are doing and feeling the same things they are. It feels safer in some ways, because let’s face it. Real life is hard and words don’t come easy face to face.
Let me know how you feel about fictional characters. Can you learn from them, or am I barking up the wrong tree? Help me out here because Willy Lamar is crying out to be heard and to talk about Sickle Cell Disease in a fictional ABC sequel to Lilly’s story.
Let your opinions be heard.
Tomorrow, a couple of tips for parents as they cope with having a very sick child.
Parents dealing with a child who is seriously ill have a new normal. The initial diagnosis and learning curve itself is emotionally and physically draining and most parents cannot look too far into the future at this point. They may well be in the middle of critical treatments before they come to realize that this is a long-term deal.
I will soon have a handy e-book available with 61 tips for parents who are learning this coping process. The tips help to plan for some of the unexpected detours your life takes when your child is diagnosed and being treated for a life threatening illness. Diseases like Leukemia, Sickle Cell, Juvenile Diabetes, and many others change the meaning of NORMAL for most families.
One of the tips I write about is education. Educate yourself, your spouse, your child, and your family and friends about the disease your child is enduring. Do not depend on the health care team to tell you everything you need to know. While they will try to do the best they can, they may assume you are aware of certain parts of the treatment plan so you best be prepared.
Another tip I offer is to plan at least fifteen minutes of fun into every single day, no matter what. Laughter is the best medicine, it reduces stress, and it keeps you connected to those around you when you share a laugh. Whether it is a laugh over pouring salt into your coffee instead of sugar, burning dinner in your haste, or a laugh over a ridiculous commercial on television, the point is you need to laugh. It releases stress hormones and helps your ability to cope under stress. And it is stressful when your child is ill.
Keep checking for more tips and information coming. As a pediatric critical care nurse, I hope to keep offering even simple tips to help you and your family cope under the most trying of circumstances.
Leave a comment or suggestion if you have a coping skill or tip you would like to share with other parents. Together we can help others through these trying times. My goal is to bless those who may need that extra bit of understanding or information. My passion is children, and sick ones particularly as they hold a special place in my heart as they battle.
My prayer today is for all parents going through this kind of struggle. May God give you strength day by day.
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