Looking on the Bright Side of Chronic Illness

I wrote this back in January of 2009

Looking on the Bright Side

As parents of children with chronic health care needs, we are taxed with keeping our emotions in check and not allowing our anxiety to show. Our children depend on us to teach them how to cope with their illness. If we lose it, they will lose it. If we do not cope, they will not learn how to cope. This can be quite difficult in the face of constant stress and new medical challenges. One way that I have learned to manage is by counting our blessings.


One of my children with Shwachman-Diamond Syndrome also has a plethora of other medical challenges. Among other things, he has had neurosurgery for release of tethered spinal cord and dealt with a neurogenic bladder for as long as he can remember. As we stood in an exam room long ago, I had to remind myself, "Pattie, if you don't lose it, he won't lose it. If you lose it, he will lose it. If you don't cope, he won't cope." At that moment, I immediately began to count my blessings and tried to see the blessings in his having to begin  intermittent catheterization (IC). It was very hard for me to contain my emotions when the doctor explained our options that day. I knew that everything I was feeling was magnified for Joseph.  I knew I had to keep my cool so that I could help him cope. It was difficult to find positives in IC, no doubt, but I knew if we wanted to make it through that first day, we would need to focus on the blessings to get us through. As our friend Angela Brown used to say, "Positive thoughts equals positive results." The first step in being positive is to count your blessings.

I admit that I am not always that great about counting my blessings, especially during periods of extreme stress. Before we began our training session, Joseph and I knelt down and prayed. My heart almost broke when he told me, "I don't think Jesus is with me. If He was with me, none of this would be happening." We later talked about how Jesus Himself cried out from the cross for His Father. I told Joseph that He did that so that we would know that He understood how we felt. We also talked about the positive side of IC while we were waiting for the nurse to come in to train us. We counted our blessings.


It has been life-changing to do intermittent catheterization every four hours during the day. I would be lying if I said I can always see the blessings in IC. The first week of IC was painful beyond measure. When he was upset one night during this first week, I began to talk to him about how we could look at the positives. This new treatment would be hard, but he would be dry and hopefully not have accidents. He would be able to go and play and not have to worry about accidents. He would not have to worry about whether or not his friends might notice. He could come in for IC and go right back out to play. I explained that while he had to restart medication he disliked, we would be doing it on a different schedule so that the side effects might be lessened. These were all things we could check off on the "positive" column. IC would also be protecting his kidneys from damage due to his high pressure, neurogenic bladder.

As he laid there in bed, he cried a bit when he realized that IC might be forever. Joseph said that he wanted to be a normal kid. I told him that I never wanted to minimize his problems or make him think that having health problems or having to catheterize was not a big deal or something worthy of being upset over. After I said that, I added, But, you know, we really need to count our blessings. There are so many children out there who have it much worse. While catheterization isn't fun, you will still be able to go outside and play, you can still ride your bike, play baseball, swim and so many other things. You'll have to catheterize every four hours, but you will still be able to do all of the things you were able to do before."

That night, we also discussed difficult topics. I told Joseph that even kids he feels are "normal" wish they were normal. It can be a normal part of childhood to feel as if you do not fit in, that you are somehow different than others--so what he was feeling was, in fact, NORMAL. We also talked about how everyone has strengths and weaknesses; everyone has struggles and suffering. These topics are not easy to bring up with a child, but they are important concepts for a child to learn. As parents, it is our job to help each of our children build upon their strengths and overcome their weaknesses, chronic illness or not. My one healthy son struggled for many years with reading comprehension problems while my SDS boys never dealt with learning disabilities. We all have problems to overcome, it is only a matter of degree. Counting your blessings is a conscious choice to look at the positive things in your life. While you do have to pay attention to the medical details, you do have a choice about how it affects your outlook.

Feeling better after our long talk, we said our prayers and he fell fast asleep. A few days later, as we were walking into the grocery store, Joseph announced, "Cathing isn't going to be so bad." His dad looked at him and said, "Well, that's a positive attitude to have." Joseph then said, "Well, I learned to look on the bright side from mom." That spoke volumes to me. As a mother, I really do influence how my children cope with adversity. If I am negative, then they will be negative. If I am positive and count my blessings, then they will learn to do the same.

Intermittent catheterization is our latest hurdle to overcome, but we have used the "technique" of counting our blessings to cope with the many other medical issues we have faced in dealing with Shwachman-Diamond Syndrome and Mitochondrial Disease for many years now.

Joseph's Point of View: Looking on the Brighter Side
By Joseph Curran

My mom asked me if it was okay to print the article she wrote about counting blessings and looking on the bright side and I said okay. I told her that I would write something about looking on the bright side of things, too.

I am eleven and I have Shwachman-Diamond Syndrome and I have to do something called intermittent catheterization (IC). Life hasn't always ben easy, but I try to look on the bright side. I learned to look on the bright side because my mom taught me to. I was upset by IC until I looked on the bright side.


Since I was little I have had a lot of medical procedures and surgeries. I started looking on the bright side of things and got through the procedures and surgeries better. I learned that even when I am sad Jesus is with me, even when I think He is not. I learned to cunt my blessings and look on the bright side and that there is always something to be thankful for. Looking for good things when life is hard makes me feel happier.

Helping Children Cope with Medical Procedures Using Social Stories

I wrote this in May of 2008.

Helping Children Cope with Medical Procedures Using Social Stories 

Having two boys with Shwachman-Diamond Syndrome and secondary mitochondrial disease,, we have had to help the children cope with many medical procedures. We still continue to do weekly infusions of IgG (immunoglobulins) here at home, which has always been stressful for my youngest son. Several years ago, a friend told me to try using social stories as a means to help my youngest with his fear of getting blood in his lines while we infuse his weekly medication. Since then, we have used social stories in a variety of ways.

Our youngest so, Joseph, has always had more fears and anxiety about medical procedures than our middle son. He has a need to know exactly how things are supposed to be, how the procedure will "play out". If they do not go as planned, it can cause a meltdown situation. If he witnesses someone else having problems with their medical procedures, this causes him a great amount of angst, as well. He has stayed up late many a night worried about anything from getting blood in a line to worrying about his veins not being good enough to start an IV the next day.

What is a social story? Social stories were originally introduced in the early nineties to support the emotional and social development of autistic children. They were developed to help identify a concern and support a desired outcome in social interactions for autistic children. These stories are written about the child himself, thus making it unique to that child.

We modified the application of social stories to fit Joseph's unique fears. They worked like a charm! For instance, we were able to extinguish his fear of getting blood in his line through the use of a social story. The strange oart of his fear was that he had developed the fear not because he had gotten blood in his line, but because he had witnessed it happen to his brother. He obsessed about this happening to him constantly-even when it wasn't IgG infusion day. We developed a social story that went something like this:

"Joseph, have you ever gotten blood in your line before? No? Well. since you have not gotten blood in your line and you have better sites for your subcutaneous injections, the chances are that you will not get blood in your line. But, if you should, what would we do? We would remove the needle and catheter. We would then make sure we could insert another needle into a spot where you already have numbing cream. We would change out the needle sets and re-insert a new one. Then we would infuse your IgG and everything would be okay."

We repeated the story over and over again, and each time it brought him comfort knowing that the problem could be solved. He felt reassured knowing that he would not have to have a needle poke him where he was not numbed first with his numbing cream. If he thought of a new problem that might arise, we figured out the solution and added it to the social story.

We had a battle with him having to get IVs placed. He would panic, scream, run to hide-one time running past the nurses station on the floor, through the locked doors and all the way to the elevator before I caught up with him. He has difficult veins, no doubt about that.. His fears have been reinforced because it can take up to eleven pokes to get a line in. He's had to be infused through a vein in his foot while he sat for over 6 hours, unable to get up. He's had medical procedures done where they were unsuccessful at getting a line started--even in the OR by experts, while he was asleep! So, he has good reason to be afraid. We could not allow the fear to consume him, though.

Social stories have helped him cope with IV placement ad he continues to have many medical procedures in his life. When he begins to worry about the upcoming blood draw or IV placement, we talk him through itfrom his perspective. A good way to come up with the social story is to allow your child to write the social story from questions you ask as prompts.

Joseph's IV social story goes something like this when he begins to worry:

"Joseph, what can we do to help your veins be ready for tomorow?" He usually answers, "Drink lots of fluids." I reply, "Yes, what do fluids do?" He replies, "They make my veins big and fat so that they are easier to poke!" We then go through the rest of the story with solutions. I remind him that Child Life will come to play with him, that we will not allow them to keep poking, that he ca get the nurses to ask permission to use the mask so that they can place the IV while he is asleep (Note: the gas can cause some children more discomfort upon awakening-this may not be an option for all children) and that he does not have to be afraid. I remind him that I will be there the entire time, he will not be alone.

Since we have been using social stories, I can see how they have helped him to make social stories on his own. He starts to worry and then tells me, Well, mom, if this happens, then I can do this, or this will happen." He has learned to cope! Through using social stories with him, he has found an active coping strategy that he can now employ himself. This is a gift beyond measure, especially knowing that he will continue to face many medical procedures throughout his life.

We March for Our 20 Gifts in Heaven #WhyWeMarch #MarchForLife

This year's theme for the March for Life is "Every life is a gift". This is one of the themes of our lives. 

Each and every one of the 20 children Chris and I lost was a gift. Many people over the years thought us insane for continuing to be open to life after so many losses, but we felt blessed because EVERY LIFE IS A GIFT. God already knew each of these children and yet he allowed them to be conceived - what a beautiful gift it was that He allowed them to be! Seeing their heartbeats brought us great joy and though they are not here with us on earth, we know that we will be reunited with them in heaven. 

#EveryLifeIsAGift #WhyWeMarch #MarchForLife #LifeIsPrecious 

A memento from the past:

Coping with Chronic Illness: Things I have learned on my Quest for a more Peaceful Life.

I wrote this back in January of 2008. Our local hematologist at the time, like this so much that he gave copies of this article to his students.

Coping with Chronic Illness:Things I have learned on my Quest for a more Peaceful Life

Coping with chronic illness is a challenge for the entire family. While it affects each member of the family differently, no one is spared. Each family member has different needs. Needs, that if not addressed, can throw the entire family into chaos. Using active coping strategies can decrease stress and improve the psychological health of every member of the household. As a parent of two children with Shwachman-Diamond Syndrome (SDS) and secondary mitochondrial disease, I have learned that there are many things that I can do to relieve stress and help the entire family cope. Limiting the effect of the stress from medical appointments and procedures will enhance the well-being of each member of the family.

Parents Must Take Care of Themselves

In order to be effective parents, we must first be able to understand and cope with the diagnosis ourselves. Before we can help our children, we must be able to help ourselves. The outlets we find and the tools we use are essential to living a full life amid the daily medical routines. Once you have taken care of your child's medical needs and cared for your other children, you must also take care of yourself. I cannot emphasize this point enough. This includes taking time to relax or doing something you enjoy.

If you, as a parent, become ill or unable to care for your child, who will care for your child? Do not feel guilty about doing things that make you feel better and enhance your well-being. Take a friend up on the offer to watxh the kids so you can grab a cup of coffee or relax. So many times, I have been guilty of thinking, "Well, I could use a small break from dealing with medical bills, insurance and doctors, but I don't want to use up all of my favors now. What if my child goes to transplant, what will I do then? Who will help in the future if I take my friend up on this offer now?" I finally started taking my friends up on their offers to help, and I am a better parent for it. We do not know what the future holds for any one of us and we need to trust that our friends understand our struggles. We need to take the time to recharge in the here-and-now so that we are able to care for our family in an effective way. These small breaks have gone a long way in improving my ability to cope with the daily medical challenges of SDS and mito.

Lastly, do not be afraid to educate yourself about your child's illness. Research and ask your child's doctors questions until you fully understand all aspects of the disease. As a parent, you need to have a good understanding of the disease not only to make important treatment decisions, but this knowledge will enable you to help your child cope, as well.

Try to Maintain Routines as Much as Possible

First, we must realize that our normal may not be normal for any other family. It can be difficult to maintain family routines amid appointments, hospital stays and home treatments. The urge to give our children the perfect "normal" life at all cost can sometimes drive us to make unhealthy choices. Do not be afraid to say "No."  If your children miss a play date, a birthday party or an activity at school, the world will not come to an end. If you are not able to volunteer at church or school, the world will not stop spinning. Adding extra jobs and extra activities creates extra stress that may not be in the best interest of creating peace in the household. 

I have learned that everyone misses out on activities at one time or another. These challenges can be a good learning tool and character builder for children. These unfortunate events can make us stronger and more compassionate. I have seen many positive character traits develop in all three of my boys over the years that we have been dealing with our medical challenges. We not only try in vain to give our children the perfect "normal" life, we sometimes try to achieve perfection in all facets of our lives. One thing living with chronic illness has taught me is that we are far from living in that elusive land we call "perfect". On noghts we have to hook one of the boys up to their medication pump, you might find that our kitchen looks like a bomb exploded in the sink! When staying up all night with a sick child or spending time at the hospital, I'm doing well to get the clothes washed....forget folding! Clean clothes are about as close to perfect as I can get. I have learned to live the saying: Don't sweat the small stuff.

Connect with Others 

Do not be afraid to join a support group. You are not weak because you reach our for support from others. We all have a need to be understood. Sometimes, the best place to find the understanding support you need is among a group of families who are battling the same challenges. Sharing experiences and information with these families can be cathartic, energizing and enhance your well-being. I am stronger because of the friendships I have developed through the SDS support group. I no longer feel as if our family is battling SDS alone and I have found a place here I am free to discuss all aspects of the disease and how it affects me and my family.  My children have also developed friendships with the other SDS children they have met through the support group. I have seen how knowing others with Shwachman-Diamond Syndrome has helped them feel less alone as they cope with the effects of their illness.

Take Care of Your Spiritual Needs

In the midst of taking care of our physical bodies and those of our children, we can forget that we have spiritual needs. It can be difficult to find time to reflect or to pray amid a normal our normal routine.  The added stress of chronic illness can make it seem as if having a spiritual life is an unattainable reality. Taking the time you need to develop your spiritual life can have a great effect on your ability to cope with adversity. If you are having trouble, do not be afriad to contact your pastor for counseling and spiritual advice. When we effectively balance taking care of our spiritual needs and our physical bosied, we can achieve harmony and find peace in the midst of the chaos.

In ending, I want to point out that there are o right or wrong answers. We all cope with stress differently and we must do what is best for ourselves and our families. Take the time to find active coping strategies that relieve stress and enhance well-being. 

SDS Support Group on Facebook: https://www.facebook.com/groups/ShwachmanDiamondSupport

Bone Marrow Biopsy Day, What to Expect, How to Survive

I first wrote this in December of 2007 for AC, which no longer exists.

Bone Marrow Biopsy Day

What to Expect, How to Survive

One of the most common questions parents of a newly diagnosed Shwachman-Diamond Syndrome child ask is, "What can we expect when our child has a bone marrow biopsy?"

Most hematologist/oncologists perform the bone marrow biopsy (BMB) at the same time they perform a bone marrow aspiration (BMA). If you are unsure whether or not both a BMB and a BMA wil be performed at the same time, be sure to ask your child's doctor. Protocol for BMBs vary from hospital to hospital, but the actual BMB/BMA procedures themselves are the same. Some hospital protocols will allow one parent to stay in the OR or procedure room while the BMB is being performed, while others will allow a parent to remain in the rom until the child is put under.

Your child will be required to fast prior to the BMB procedure. Some doctors will allow clear liquids up to sic hours prior to the procedure, but this also varies from hospital to hospital. Be sure to ask your child's doctor what time to begin the fast and about clear liquids. You will also need to ask which medications your child will be allowed to take the morning of his BMB. You will likely be asked to arrive approximately two hours prior to the procedure. After you check in with the nurse or front desk, your child will have an IV placed and blood drawn for routine labs (or any extra labs that may be necessary). Some hospitals may require a pre-operative appointment before the BMB.

Soon after your child's IV is placed, you'll be asked to escort him to the OR or procedure rom. The anesthesiologist will go through a list of questions and examin yor child. At this point, your child will be put to sleep and you will be asked to leave the OR if hospital protocol so requires. The procedure takes about twenty minutes total.

The biopsy site, usually the iliac crest (in the back, just above the hop), is first cleaned with Betadine or something similar. The hematologist wil then inject a solution of Lidocaine aroud the biopsy site. The bone marrow aspiration needle with stylet is then inserted, penetrates the bone and enters the bone marrow cavity. The stylet is then removed and marrow extracted using a syringe. Once the marow is extracted, the needle is removed. For the biopsy portion of the procedure, a different needle is used. Once the biopsy needle is inserted and hits bone, the stylet is removed. The biopsy needle is then moved in an alternating clockwise-counterclockwise motion. The biopsy needle reminds me of an oldfashioned corkscrew! Once the biopsy sample is obtained, the nurse or doctor will apply gauze to the site with pressure to stop any bleeding. A sterile dressing is then placed over the biopsy site and should remain in place for 24 hours. Following the procedure, your child will be moved to the recovery rom. Once he starts to wake up, you will be called back to be with him.  Once he is able to sit up and drink, his IV will be removed and you will be discharged shortly thereafter.

Your child will likely be a bit unsteady on his feet at first, but that will improve quickly. The biopsy site will cause him to have mild to moderate pain for a day or two following the procedure. The doctor will give you instructions on what medications can be used for pain management. My boys have had some 25 plus BMBs each and we have never had any complications arise. If you notice excessive bleeding or the biopsy site seems to be infected, contact your child's doctor immediately. 

Survival Tips

Over the years, we have developed what we call our "Bone Marrow Biopsy Day Strategy". Hopefully, some of what we have learned over the years will be of help to you. 

If you have a child who has never had an IV placed or who is afraid of getting an IV, you can request a special numbing cream such as EMLA be used. The cream is placed on potential IV sites one hour prior to the IV being startd. Keep in mind that some children might find it worse using EMLA because of the hour waiting with the EMLA causes them anxiety. My youngest would panic the entire time the EMLA was on, which made BMB day worse for him. 

The night before the marrow biopsy, we usually allow our boys to stay up later and allow them to eat something just before bed. This helps because they will sleep until just before leaving for the hospital and won't miss not going through their regular breakfast routine. We also remember to bring along some of their favorite snacks and driks to the hospital so that they can eat as soon as the doctors allow. Some hospitals will offer your child a breakfast or lunch tray after the procedure. 

Bringing stuffed animals or a favorite toy along is also very helpful. If your child likes to play doctor, a toy doctor's bag with pay doctor tools can be a great coping tool. Some hospitals will give children splints, tape, IV tubing and other goodies for your child's doctor bag. It can never hurt to ask. Keep in mind that some hospitals will not alow any personal ites in the OR, while others will allow one or two. You'll need to check hospital policy ahead of time, so as not to cause your child any undo stress if his favorite toy can't come along with him to the OR for his procedure. 

If you have a child who has to have repeat bone marrow biopsies and he is scared, you might consider purchasing an anxiety workbook to help your child cope with medical procedures. You can even make your own "Bone Marrow Biopsy Day" book. We made a book when my kids were little and had it published later. Several child life departments use the book, too! Children want to know what happens while they are asleep, and taking pictures is a great way to show them. In our case, we have taken many pictures over the years and also had a wonderful doctor who took pictures for us during the entire procedure. Our book was a hit not only with Child Life, but with the entire staff! Many signed a copy my boys brought with them to their bone marrow biopsies. 

For many children, like those with Shwachman-Diamond Syndrome, repeat medical procedures is a normal part of life. As parents, we can help our children cope by preparing ourselves and equipping the with the tools they need to cope.

You can order my book for the Nook here.

Here is a video I put together from one of my boys' BMB days:

Here is a interactive online game that helps children discover the role that bone marrow plays in the body and why bone marrow aspirations and biopsies are important http://bonemarrow.starlightprograms.org/

Tweetfest: March for Life #WhyWeMarch #MarchForLife

If you can't join your fellow Americans in DC for the January 22 March for Life, you can join us on Twitter. There will be a TweetFest all day using the hashtags #MarchForLife #WhyWeMarch

Here is the doublesided sign I made for the march on Thursday.

Front:

Back: