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Feature: A journey with your Child and Cystic Fibrosis By: Kelly Tucker |
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 Life is a journey for all of us. As parents, we have experienced the greatest joy in our journey when we were blessed with children. But sometimes it may not feel like a blessing if your child is diagnosed with an illness for which there is no cure. When your child is diagnosed with Cystic Fibrosis, life’s journey takes on new twists and turns. The path that seemed fairly direct and familiar to you may now overwhelm you with curves and setbacks. Fortunately, there’s help for travelers like us. Our child’s medical team will point us in the right direction with advice on the amount of enzymes to be administered, how many breathing treatments to give and how long to perform CPT. This team will help chart a course for our children. But some of the bumps and potholes we run into will be emotional ones. Shock-Guilt-Anger-Frustration and Denial. Certainly Cystic Fibrosis isn’t a trip down easy street. But the time you spend learning about these obstacles, recognizing as you go through these emotions and how to get past them, will be time well spent in helping each of us as we travel down this all-important journey. This Trip Begins with Denial
As you begin to accept the realities of Cystic Fibrosis, you and your child can begin to establish a new reality in your family life. With the vast resources available to you today as well as the support of family and friends, you can make it through. Step by step. Find supportive people you can talk with about Cystic Fibrosis. Tell them how you are feeling. Find other parents who have children with CF. Family members--friends--counselors—the medical team—Ministers. It’s very important that you talk about your feelings. Keeping it inside only makes the issues seem unbearable. This line of communication should also transcend to your relationship with your child. The parent/child bond should be closer than ever and communication is the key to that bond. Learn as much about Cystic Fibrosis as you can. I remember when my son was still in the hospital, my laptop served as a great educational resource. Learn about CF—the medications used to treat CF and the medications still in development. Since CF is an auto-immune disorder, a parent should also educate themselves about prevention of infections. For example, the importance of washing hands, what to do if another family member has a cold, tips to prevent cross infections such as trips to the grocery store or clinic visits. Once you are comfortable, take advantage of any opportunity to teach your child. Maneuvering on the Road of Grief
While grief may hit you personally, it’s important to remember that others have made this trip. A lot of bumps have been mapped. Some can’t be avoided. But studying the journeys of others and giving your family time to grieve will be helpful to you and your child. Coming Up On Anger It’s not fair! No child should have Cystic Fibrosis, but especially not your child. It’s perfectly normal to feel angry, even furious. You might feel angry at yourself, your spouse, your child, your parents, the doctor who gave you the diagnosis, or even God. But what you’re really angry at is Cystic Fibrosis. When Christopher was diagnosed, I felt like everything had been stripped from my life. I no longer felt like a mother but rather a care-provider; a nurse. The diagnoses initially changed everything about motherhood. I brought my 4 ½ month old home and couldn’t rock him, hold him and put a bottle in his mouth because he was being tube feed. Who wouldn’t be angry? It felt so mechanical to me that I tried to detach myself. Nursing anger is very destructive. It can make you a shell of the person you once were. It can destroy everything you have worked for--your marriage, your relationship, family, friends, your relationship with God and yes, even your relationship with your child. Anger can be helpful if channeled properly. Accept that this is a part of grieving. Find effective ways of dealing with your anger. The last thing you would like to happen is this anger becoming part of your child’s character. One day I realized that I was really being selfish – My child needed me more now than ever. I was the one that had the problem, not him, he shouldn’t have to suffer more than he already has—I truly wasn’t embracing him totally. I had to accept that I couldn’t change the fact he was born with CF but I could change how I handled it. I was (at times still am) feeling sorry for myself and my child. It is a battle I contend with each day. Realize you can choose your reaction to any given situation and that this choice can be either helpful or not so. You can react passively and bury your feelings which will only prolong the grieving. You can react aggressively and lash out at others which may hinder much needed support from them. Or you can respond assertively by dealing with the situation. By owning up to your feelings and moving on. Keep in mind that how you handle situations will be how your child handles them today and in the future. Defuse anger by doing something active-walking-running-biking or swimming. I know when I was really at the height of my anger; I would spend time landscaping at our ranch house. I never operated a lawn mower before but became obsessed with how the landscape and lawn looked. Let me say that one of the best ways of getting your anger out is to mow the grass during a Texas summer. I was exhausted! The Valley of Depression You’ve been told your child has Cystic Fibrosis. You’ve hoped that it will just go away – but it doesn’t. You’ve yelled and cried about it – but it’s still there and until there’s a cure, it’ll always be there. With all that is going on, who wouldn’t feel depressed? It may be difficult for you to get through the day without crying and feeling sad or hopeless. You may feel tired all the time. And you may be thinking negative thoughts far more than you ever have before. For the longest time, I would wake up each morning wishing I just had a nightmare—feeling like my family’s life had taken a detour. Imagine waking up every day with those negative thoughts! What a waste when time is of the most importance. Depression has a way of feeding off itself. It becomes a life all its own. What you may experience is not unusual, it’s not weird and you’re not crazy. It’s just another part of grieving. And it has happened to everyone that has experienced their child’s diagnoses of CF. Try some of the following to counteract depression:
I try to remember the person Christopher is today has already exceeded every dream I could have imagined. That is a gift he has given me. If you notice that these feelings of depression are interfering with your daily routine, if you begin avoiding people, or activities you’ve enjoyed in the past, or if you are just too tired to take care of everyday tasks, it might be a good time to check with a doctor. It’s important to take care of yourself just as you would your own child. Fear of Flying Fear and anxiety are connected at the hip with a diagnosis of Cystic Fibrosis. The moment we received the news, I can remember my mind flashed to many different fears -- How long will my child live? Can he go to regular school; play sports; will he ever drive a car; get married? What if my child is exposed to someone that has a cold? Will he grow properly? Will he need growth hormones, a liver and/or lung transplant? What about his quality of life? Will I ever be able to look him in the eyes and tell him it’s going to be OK!
Look for ways to try to keep your little one as healthy as possible. For example, I found using the “Germ Doctor”, which was originally intended to sterile pacifiers, teething rings and toys through a dry heat process, has been helpful in keeping my son’s breathing equipment sterile. Remember fearing something won’t make it go away. Take action to control your fear and realize feeling the fear is OK – nurture yourself and your emotions. FEEL THE FEAR AND DO IT ANYWAY! Baggage Claim There’s an unnecessary piece of baggage parents and children always seem to take on this journey. It’s easy to carry along but amazingly difficult to lose. It’s a bag of guilt. You can be sure you or your child is feeling guilty when you think or hear things like:
You see, harboring the “should’ve, could’ve, would’ve” kind of guilt can so easily transcend to your child’s thought process, not-to-mention quickly diminish your own self-confidence. The truth is, that nothing you did, or did not do, caused your child to have CF and for that matter nothing your child did caused it either. Reassure your child (and yourself) that no one deserves to have CF. No one is to blame. Remember to strive for control, not perfection. This will help cut down on the feelings of guilt which come from not always doing exactly the right thing. One way of building a foundation of self-confidence is to always celebrate the successes. Refuse to minimize them! This is a Long Journey
Considering this disease will be with your child 24 hours a day, seven days a week, 365 (sometimes 366) days a year, it’s easy to see that frustration will add some big bumps to this journey. There will be days when you and your child sit back and smile. Cystic Fibrosis is merely some meds and a few breathing treatments each day. Life seems to go about normally. Everything is going smoothly and you begin to think this CF thing might not be so bad after all--When suddenly things take a dramatic turn. That’s because your child lives in a human body. And as we all know—the body is very unpredictable. In fact, one of the few predictable things about Cystic Fibrosis is that every so often, despite everyone’s best efforts, things will go haywire.
At times we cause our own frustration by setting perfection as a goal in dealing with CF. But this can cause more frustration for you and your child than it’s worth. Let this be your motto: perfection is only temporary. Shoot for control. Sometimes frustration will stem from the ignorance and insensitivity of others toward you or your child. There are those who, despite having good intentions, become over-protective and try to keep your child away from their kids. You may feel isolated from the other parents with “normal” children. Not only is this kind of treatment frustrating but it’ll probably continue to happen throughout you and your child’s life. Each time you confront someone about this type of behavior, it will be easier and your message will be more effective. Try some of the following: Act assertively. Ask for the change you want, explain why you want it, and if necessary tell what steps you or your child will take to make it work. Repeat process as needed. Take advantage of these frustrating opportunities to educate others about children with CF. Remind the person you are speaking to that it is important for your child to have a normal, active, exciting childhood. Years ago when parents were hit with the news that their child had Cystic Fibrosis, they were told to take their child home – not to worry about school – the child’s life span would be around 5 years. Not so today! Our children are some of the brightest, most athletic and compassionate kids in society. As parents, our goal should be to provide every opportunity for our child with CF. These should be the same goals and dreams we had for them before we knew of the diagnosis. We owe it our children to bring them up with the best social skills, the best education and the best love we can offer. I firmly believe a cure will be found for our children. However, don’t wait for the cure—help your child to live for it. Keep him healthy for the day there is a cure. ARE WE THERE YET?
The down side of this journey is that it will never end. It is a journey of constant searching, learning, and striving. The up side is you have already taken on this challenge. Your desire to learn more has brought you here. Your interest and actions will serve as an excellent role model for your child. Get involved by starting a support group, participating in activities that raise money for Cystic Fibrosis such as the Cystic Fibrosis Foundation’s Great Strides. The Cystic Fibrosis Foundation has pioneered the efforts to eradicate this disease. They have fought for our children long before they were born and will be the leader in continuing this fight until there is a cure. To learn more please visit www.cff.org. Another respected organization in the fight against CF, is the Boomer Esiason Foundation. This organization was formed in 1993 after the diagnoses of his son, Gunner. Recently they have taken on the fight to save government funding in a number of states that have cut programs supporting the medical treatment of financially less fortunate CF patients and their families. Join their email list which provides updates on newsworthy articles and research development around the world. To learn more visit www.esiason.org. The Cystic Fibrosis Research Institute is a wonderful organization dedicated to the support of CF families and the research to a cure. CFRI conducts an annual conference for parents, patients, doctors and educators. This conference focuses on new medications used in CF treatment and current research developments. To learn more visit www.cfri.org. The CAT Foundation proudly bands together with these and other organizations as a team effort to help patients, families, to fight for government funding, mandated newborn screening and to help find a cure for our children. I encourage you to strive to manage CF -- comforted by the fact that people all across the world are fighting – fighting for your child’s life. Comforted by the fact that as parents you are not alone—you are now part of a family perhaps not one you imagined, but one that shares the same feelings and desires for your child. Seek out the support and you will find new friends that will help you along your journey. In the meantime, take on the day-to-day challenges, celebrate the successes, and build a life which nurtures your child-Who just happens to have Cystic Fibrosis. To Share Your Story contact kelly@catfoundation.org |
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Denial
is a typical reaction to a diagnosis of Cystic Fibrosis. You may try to ignore
the news as long as possible. It’s tempting to live in a world of denial since
on the outside our children look so normal. I use to say “My husband and I are
living in a fairy tale right now. At 6 months old, my son is growing 
We usually think of grief only in connection
with a death, but a diagnosis of cystic fibrosis can feel like a death to both
parents -- the death of your previous way of life (which seems care-free in
retrospect), the death of your dreams and aspirations for your child, the death
of your idea that you can protect your child from all harm. Give yourself and
the rest of the family the time and freedom to grieve the losses that you may
feel. You are facing many changes –your daily routine—spontaneity seems to flee
the scene. Your self-image takes a beating. Unexpected emotions lie in wait
around every corner, while unanswered questions plague everyday existence.
You’re definitely on the road called grief. 
If these are things you have found yourself
anxious about, then talking about them can
help
alleviate them. After several years I still have these same fears – it doesn’t
matter how much I have obsessed over these questions. I still do not have the
answers — No one has the answers! Take time to learn about CF; the medications;
research the drugs in development. Educate yourself on the nutritional aspects
of CF and the foods that bring the most “bang for your buck” for your child.
Then you will
experience the frustration. Frustration that sends everyone connected to
CF—especially parents—right over the top. Dealing with this kind of frustration
requires patience, stamina, knowledge and diplomacy. 