Archive for the ‘Cystic Fibrosis’ Category

The “CF card”

Posted: June 21, 2012 in Cystic Fibrosis, mom

I have been trying to squeeze out a blog for a couple weeks, now. To no avail. I apparently am in a fog in the mornings and do my best thinking at night. I can never seem to shut my brain off then. I could write entire volumes if I my pillow wasn’t so soft and comforting.

But, this morning I awoke to an email that was so preposterous and upsetting, my brain starting ticking. I won’t share the intimate details as I feel it unfair but let’s just say I am exhausted of childish drama. It has no place in my life. My husband and I have a hectic life. No, we aren’t gallivanting to exotic locations or whisking the kids to exciting venues, but we are busy. Busy with staying afloat in life. We can’t go anywhere or schedule anything without considering the effects on Colby or how treatments and medical regimens fit into the mix. And, when we need another ‘tune-up’, we have to make a plan for other children and our lives go on hold. We have and continue to endure the loss of his young child, a harsh reality of how precious life is. Somedays, we are strong and steady and other days we are taking turns hitting the floor.

Now, I’m not saying that this life is unbearable. Nor do I think I am ‘special’ or better than anyone else for having a child with CF. But, I have been accused of that. And now, broken because of it.

Do I really come across that way? Good Lord, I pray not. Or is this just someone that knows my weaknesses and my stresses enough to take a stab at me? I try not to be the person that when you ask how things are, go on and on about the burdens or pains that she has. And I don’t lean on too many people for help solving my logistic hurdles. I don’t even share that we have CF until it is absolutely necessary. And when I do share, it’s not in an attempt to gain pity or penance.

Only in extreme circumstances, do I play the “CF card”. Like, having to sit in a waiting room full of hacking and snotty children. We come prepared with our mask but I beg to be placed in a room for fear of catching God-knows-what. Sit me in a room for two hours but, do NOT leave us out here! Scary! And in school, I have to constantly remind the teachers not to be permissive with him. He has to be disciplined and kept in check, just like the rest of us.

So, I am losing my mind trying to dissect myself and make sure that I am not that girl.

In my correspondence I wanted to be clearer about my boundaries. This person wants to be at everything and know everything about Colby. And a constant text of “How’s Colby?”. Apparently, I am rude and don’t love that person if I don’t share the “experiences” and well-being of my child. Whoa. MY child. I don’t owe anyone an explanation as to why I need to deal with things on my own sometimes. Or why I don’t someone in my grill all the time about what they are doing next to him and why. I’m not trying to be controlling or secretive, but some days it’s hard enough for me to wrap my head around things.

 

The pity for my son is a whole other issue. I can’t stand it. Pity does not yield strength. This is the hand that he (and I) was dealt and it is a heck of a lot better than some’s. He can run and play and learn and laugh. He can go to school and on vacation and ride roller coasters. I don’t coddle him in fear of him refusing treatments or becoming a drama king. Tough love, I say. We don’t have a choice about treatments or medicines and only in the hospital do I allow him to do the one liquid med through his g-tube. And, I still frown upon it. We don’t take short cuts and we don’t cheat.

So, what am I missing? Is it just this person’s need to be the center of attention or are they trying to capitalize on my son’s plight? (You know, the type that likes to always have a sad story to tell about their cousin’s son or whatever?) Or am I the one that needs a readjustment?

“What if I only live to be 35?”

 

 

Last month was a difficult one for my Colby, in school and at home. He acted out, he lied and lied and lied. He terrorized his brother and sister, he was destructive and manipulative. And all the while I was peddling just trying to figure out what was going on with him.

He was grounded for several weeks, he was warned of harsher times to come and still there seemed to be little improvement. He is resilient, hard-headed (no BULL-headed) and very stoic in his emotions. So very frustrating! And then I came to a heartbreaking realization….

My sweet, young, intelligent son is clearly perplexed with his future, or how much of one he really has.

At his last hospitalization in October, he randomly made the statement….”I’m not real sure that I want to go to college. I mean, it’s a hard decision.” Really, son? Why is that a hard decision? “Because I don’t want to waste time. What if I only live to be 35? I want a wife and kids.” Profound. Jaw drop. Tear. Heart. Breaking.

I flashed back to this conversation as I lectured him on his lying, his behavior towards his family and at school. And as I spoke to him about my job as a mother to train him into a good man, a successful adult; I wondered if this was, like in my mind, in the back of his.

I felt like such a failure as a mother! How could he think such things? We all have morbid thoughts and worries of how long we will be around for our family, but this poor little guy, at the age of 9, really has validity in his concerns. I have allowed him to hear too much, read too much, but have yet to explain to him that we all have uncertain futures. That no day is promised to any of us.

I decided to come from a different angle….

The following day, I pulled him aside and talked with him about all the wonderful things that are happening in the CF community. I pulled up blogs of mine, stories of other families and adults that are living with CF. I told him of people that live into their 40’s, 50’s and even 60’s with CF. I showed him the CF Foundation site and all the research that is being done to find a cure. And as grace would have it, at the time of this momentous conversation, was the same week that the FDA approved the first “fix” for some CF mutations (Kalydeco). I explained that while this particular medicine doesn’t directly affect him, there is another one out there that I have been watching since it was first publicized. A medicine, VX-809, that would “fix” what didn’t work in his body and he was the perfect candidate for it (homozygeous Delta F508).

His response? A huge smile lit up his face and he said “if they get that medicine, I am going to pass out.”

Over the years, I have done my best to show my son strength, tenacity, and normalcy in the face of adversity. But I have failed to show him, tell him about hope. The most profound idea, emotion and gift that we can be given. With sweat and tears, I have made all of his treatments and medical regimes non-negotiable and “normal” at the same time. It is just what we do. It’s not a big deal. Oh, but it is. And now, he understands how real it is. Mommy is good at lying, too. I play pretend far too well.

Since our discussion, he seems to [slowly] be understanding that there is a future and that he has one. He has been working harder at school. He has made more effort to help around the house and “do the right thing.” I can tell that his outlook has changed a bit and the Cub Scout phrase that he hears every week at his meetings, “Do your best”, has more weight for him. He still makes mistakes and still can carry an attitude. But that tenacious, bull-headed attitude and heart of steel is what God gave him in his fight. It’s what is going to carry him through this and make him a successful, strong and happy man one day.

He has said in recent months that he wants to be a nurse at Childrens’ Hospital because he wants to help kids like all the nurses that have been helping him. He wants to volunteer at Victory Junction Camp, even if he doesn’t get paid, so he can help other kids have fun like he did when he got to go.

All because of one little word….HOPE.

Again, we reside within the walls of Childrens’ Hospital. I was correct about it being time for a “tune-up”. And, while it is difficult to adjust our world for it, I am grateful that this visit should carry us through the holidays and hopefully through the end of the school year.

We are beginning a new trend, “tune-ups” twice a year; May and October. I can accept that (even though we used to only require one a year). I understand it is likely that we will continually progress over the years, but he still responds quickly and has it easier than most (despite his genotype, Delta F508).

All this being said, I am currently faced with a conflict in personality with our primary pulmonologist. Okay, ‘conflict’ may be a bit strong of word.

At my son’s diagnosis at 5 weeks old we were assigned the senior pulmonologist, the great Dr. Lyrene. For the following five years he was our fearless and dedicated leader. He was compassionate to our family life but proactive with my son’s care. He understood that I had more than a CF child under my care. At each clinic visit he encouraged me and took time to answer all of my questions, never leaving me feeling rushed or overlooked. I felt safe in expressing my emotions and trusting in his decisions regarding my son’s health. I suppose I felt like he actively treated ALL of us and ALL of the aspects of CF, not just the medical aspects. I often catch myself saying ‘we’ have CF. It may be that in a handful of years that will sound offensive to my son as it is HE that has to endure the shots, the treatments and the medicines, I understand that. But this disease affects us all…the entire family. We stop what we are doing and refocus all of our energy on him. Daily, we are ALL affected by the routines and meeting his needs. I’m not playing the sympathy card, this is just our fact of life. Many looking from the outside would be shocked by all that must be done and monitored, but we all collectively accept it as normal in our routine. My point is just that CF is more than a hardship on only the patient.

Anyhow, Dr. Lyrene, who understood all of these emotional and physical taxes upon us, retired when Colby was 5. It was sad news for us to hear and the idea of having another doctor that was unfamiliar with our family and/or not as understanding of the impact upon us all was, to say the least, scary.

I’m the type of mom that is very active in [all] of my childrens’ care. I stay calm through the scary gashes of the head, I am reassuring but firm when one of them requires a shot, or medicine and I find comfort in knowing the real truth of a situation, don’t sugar coat it for me. From the beginning, I have had a lot of medical equipment to adjust to and procedures to be familiar with, so there is little that I don’t already do (like shots , changing g-tubes and other medical procedures). I’m the type of mom that wants all the information, good and bad. You have to be honest with me about it all and take the time to help me understand. Don’t dumb it down. Don’t make it appear as if it isn’t a big deal, when it just may be. The unknown to me is far more concerning to me than any truth.

I will trust my doctor’s expertise if in turn, he can respect mine. I will do all that I can to facilitate the best care for my child, but I refuse to allow CF (or anything for that matter) to control our quality of life. We will not sit and mope, feel sorry for ourselves or lock ourselves up. We will live, laugh and love with the acceptance that no day is promised to us.

So, where is this dilemma, you ask? In Dr. Lyrene’s retirement we were assigned the newest addition to our CF team. While the team operates collectively and are aware of each patient’s care, this new doctor (Dr. Hoover) would be our primary. He would be the one seeing us in clinic, answering our questions and making the final decisions in the care of our Colby. I must be honest and say that my guard immediately went up. I knew that wasn’t fair so I did my best in the first several visits to be honest with him and request the same in return. We both had to trust each other, that Colby’s care was at the root of all decisions.

Since then, four years now, we have made progress but I have yet to feel that comfort and ease that I had with Dr. Lyrene. I still feel like I need to rephrase a question a couple of times to get a complete explanation and his compassion for the rest of my family is lacking. Dr. Lyrene was always good at giving me warnings for when we needed a “tune-up”, giving me time to adjust our schedule and call in reinforcements to keep our home running smoothly. Dr. Hoover doesn’t seem to make decisions in this fashion. His remarks, suggestions and course of treatments are dry and lack empathy, to me. Don’t get me wrong, my son hasn’t an issue with him. They laugh and joke with each other, their relationship is light-hearted. But, at Colby’s age, there is little that he requires as far as emotional support or questions from the doctor. If Colby has questions or fears, he comes to me.

Over the years, of course, the rest of the team has been on call during our many “tune-ups” and most recently have been the ones overseeing them. Generally, we do not see Dr. Hoover during our tune-ups. So, I don’t know if this is just part of his role within the team or what, but it has at least given us the opportunity to connect with the rest of the team. In this time, I have learned that not all members of our CF team have his same bedside manner or abrasiveness. They (one in particular) seem to understand that I have more than one child that need me and depend on me. They see that I am often torn at the seams trying to be everywhere at once. He not only sees that but shows compassion, understanding and adjusts our plan to the needs of the entire family. He is encouraging and uplifting in his remarks and doesn’t seem bothered when I have questions or concerns. I don’t feel like I am chasing him down to get a straight answer.

So, I think I am at a breaking point a bit. I have requested a visit with our social worker to discuss how I am feeling about it all. I am hoping that maybe this will be passed effectively to Dr. Hoover. I don’t want to be perceived as the neurotic mom, though, and I fear that that will be the only outcome. What I really want is a more open relationship with Dr. Hoover but if it comes to pass that this is just his personality, then I am considering requesting a change. I don’t know how that is handled or if it is ever even done. But, I want to feel that we are treated as a unit, a family, because that is how we operate. We all have a job, a place and importance. I don’t want to feel like I am foregoing one of my children for the other. I never want them to question that they were all loved equally and unconditionally. I want them to all look back and have memories of me being there for each of them, not just shooking them to care for Colby.

So, any opinions? Any suggestion? Any and all would be appreciated….

Can you relate to any part of this (CF or not)?

Am I being an over-bearing mother of a patient? Am I being too harsh or expecting too much??

Written: July 31, 2006

Jesus cut his wings to lend him to me for just a while...

There are a lot of pointless tv shows, movies, and music videos that we watch everyday. Rarely do we find something that is inspirational, heart-warming and deep. Or maybe we are just so enthralled and so busy in our own lives that we dont receive the messages that are intended for us….

When my son, Colby, was diagnosed with Cystic Fibrosis, my first instinctive response was Why him? Why put him through this? But what if its not harder on him? What if God gives him more strength and courage than the rest of us? What if his faith and bravery are for you? What if they are for me?

We all have hardships. We all have struggles. We learn from them and move on, hopefully becoming better people because of it. Colby’s is a daily struggle and fight, not necessarily to learn something. His struggles may not even be for his benefit or understanding but for someone else. Can you say that about your life? Do you ask Why me? everytime something hurts or seems difficult? Or do you appreciate conquering it and sharing what your faith has carried you through? Does it affect only you or do you allow someone else to learn and grow without the pain?

God’s love is dedicated to not only our growth but to our success in overcoming what may seem to be impossible and to achieving more than we thought we could. Colby is here to touch some one else’s life, to help others see God’s love, strength and mercy. Is he here for you? Or are you here to touch some one else? You’ll never know until you reach out…

Its your turn.

I have said before what a daunting task it is to be a mother. I never knew how difficult it was. My mom made it look FAR too easy. The house was always clean and squared away, dinner was always ‘presented’ to us all gathered at the table each night, we never had a lack of clean underwear, and we even enjoyed many a vacation to Disney World, or Six Flags or …..

These are all things that I can’t even FATHOM accomplishing ONCE, nonetheless, EVERY day! I am lucky to have toilets clean and beds dressed. Dinner is a fly-by invention that is eatean in shifts, at best. The laundry is a constant struggle to keep up and vacation?? Seriously? NOT even on the radar.

Here, we struggle with the normal juggling of a family of three kids, a psycho ex-husband, a family pet, and dysfunctional families…except mix in a load of mourning for the death of a daughter/step-daughter/sister, a FULL cup of Cystic Fibrosis and the medical regimen, and a dash of related regrets and stresses. I often feel like I am just barely treading water a lot of the time.

And so, enter the past few months. We have conquered baby girl starting Kindergarten and mommy’s subsequent depression, resulting in the addition of a puppy to keep her company. We have started cheer and cub scouts and RA’s; bussing kids to and fro, but enrich their experiences, I must! Signed up and paid for three field trips, and agreed to chaperone each of them (can’t do just one for fear of jealousy and broken hearts!). And administering benadryl, claritins and breathing treatments daily to attempt to survive the cold season.

I am exhausted, to say the least. My husband and I flirt through out the work day, fantasizing about being intimate again. Only to have finally put everyone to bed and sit to relax, we are too tired to take the time for each other and fall asleep on the couch; awaking with cricks in our neck and knots in our backs. Alas, another day of the same chaos and messy juggle.

Add to this current juggle, the dilemma I currently face. The internal dialogue, the fear of failure and mistakes are haunting me as I type. My eldest (boy, 9) has CF and is currently fighting hard the same colds that the other two are weathering. Only he can’t fight when CF keeps him held back. It is time for a “tune-up.” The infamous 10 to 14 day hospital admittance full of breathing treatments, chest pt’s, finger pricks, and IV antibiotics. All of life and obligations are placed on hold to get him back up and running at his normal tilt. These visits normally come with more surprise and are suggested during our clinic visits (every 3 months), but every so often, I can tell that it’s just time.

So, here I start on another juggle. The placement of the younger two with trustworthy help for the next few weeks, checking in from afar, while I tend to my tough little CFer. Still, the homework must be done, the field trips still attended, the bills still paid, the husband brushed past in frantic travel from one place to another, the laundry still has to be seen and the dog still has to be fed. STEP RIGHT UP! TIME TO SEE THE SHOW!

To be fair. I didn’t know what CF was when my son was first diagnosed. And now, nearly nine years later, it has become such a huge part of our lives that I forget that others have not a clue. They attempt to relate (as the title suggests and no lie, this was said to me this week) but fail miserably. Bless ’em. I have heard some good ones, but currently this is my favorite. I just smiled and hoped that she would investigate CF and find pie on her face. She better. She is my son’s teacher this year. It’s gonna be great!

I try not to be so frustrated with ignorance, but no need to one-up me here. This isn’t a game show where the most troubled wins some home make-over. And, I’m not telling you to make you feel sorry for him (or me). Generally, I do not share it unless there is some situation that warrants you needing that information. I, otherwise, do my best to pretend we are completely “normal.”

Normal. Now there’s a word that plagues us and the CF community as a whole, right? There is no such thing! Although, I have gotten good, really good, at pretending. When asked by other parents during our “tune-ups” at the hospital why I am there, “My son just has CF.” So, I probably just perpetuate the ignorance, I know. I just try so hard to rest on the positive aspects of our path and smooth out the bumps. Eternal optimist, I claim to be.

I digress. For those who are all too familiar with Cystic Fibrosis, you understand my plight. For those who have no idea what CF is and looking for answers and/or direction. Welcome and buckle up!

……

Our doctors did a great job in the beginning; informing and comforting us. Consultations, social workers and literature happily provided to help us understand. They cautioned, however, on what books and information existed on the internet. That not everything was current or factual. The only book they suggested I read (and acknowledge) is Cystic Fibrosis: A Guide for Patient and Family by David M. Orenstein. It still is a great resource and remains on point with all of the medical information that you should need and are able to comprehend. However, I found little out there that truly captured the essence of CF life, as a patient or as a parent. In the years since I have had my son, I have learned that maybe that doesn’t exist because each CF’er has a different path and no two are alike. There is no benchmark, there is no compass.

So, there in lies the problem.

“Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus tha…..”

OMG. If I see that explanation another time I’m going to scream! It just doesn’t make any sense and it is so political and uninformative, to me. I explain CF a bit differently, with a little more emotion and a lot less medical jargon…..

“Cystic Fibrosis is a genetic disease, passed down from the mother and the father. It is coded in your DNA and cannot ‘get better’. There is no cure and, statistically speaking, averages a life expectancy of around 37. It affects three major areas of the body: the digestive system, the lungs, and the reproductive system. The stomach doesn’t digest food at all or on its own, a simple cough can become a big deal because the body works against itself to fight it off and for boys, they are generally impotent. My child is still able to learn, play and jump around just like others. His quality of life is quite good, actually. There are a lot of things that I have to think about and watch and even more medicines to administer, but otherwise, he is a wonderfully healthy and happy little boy.” There. Do you feel informed? Did I capture some of the good and some of the bad? I realize it doesn’t put it into perspective, yet, but this is just my opening statement.

About 1 in every 31 Americans are carriers of Cystic Fibrosis. That means that there are over 10 million carriers in the U.S. alone. If you go to a party, there will be at least 1 carrier present. It gets more mind-boggling when you think about procreating with that ONE other person in the room and [possibly] creating CF as a result. The chances are slim, but there. I’ll tell you one thing, it will swiftly make you question every decision you ever made. The personal guilt that goes along with the genetic part of this disease is intense. I procreated (after marrying) that one other person, three times and I got one child with CF, one a carrier like me and one is completely clear. Those are your three paths when all the stars line up for you. A 50% chance to create another carrier, 25% chance for no CF, and a 25% chance for CF. Roll the dice, I did.

CF has not been a death sentence for us and I refuse to ever allow my self to feel that way. We do our best to take it in stride, but when the road tries to change and throws in some curves, I definitely start to waiver on my optimism. To me, that’s the most difficult part of this disease. It is ever-changing and has no respect for how well you have settled into a pattern. There is a cadence to our days; breathing treatments, medicine regimens, eating healthy and staying hydrated. Exhausting some days, but good maintenance is key and our rituals bring some comfort. Even when we are admitted for our “tune-ups”, I find comfort in knowing what to expect. I have never enjoyed a pity party (even if it was for me), but I do hate the unknown. When my son’s “normal” starts to change or he gets the first clear of the throat, I know it’s time to suit up and get ready to battle. I’ll be damned if I let it get the best of me.

So, in all of this, maybe you can find some insight if you are one of the mis- and/or uninformed. If you know all too well, I hope you can empathize and find comfort in hearing another’s journey. I won’t be the one updating every day on lung functions or doctor’s visits, but I do want to share the “meat” of CF. The wide spectrum of ups and downs and how we cope with them. I want to inform and connect without the bore of the mundane and trivial (no promises).

It has been difficult to connect with other CF families and learn more myself about the disease. There are some seriously strict contact precautions between CF’ers and families. I have reached out on Facebook to no avail, FB is all about “me” these days. There is no other mom in clinic as they are so careful to move us swiftly out of the waiting area and no support groups for CF in our area….another harsh reality of CF…..it’s a lonely path, physically and intellectually.

Hold on, little one.My son had a rough start into this world. He was over 6 weeks early and, as we would later learn, in distress. We lived amongst the halls of Childrens’ Hospital in the crisp fall months of 2002. I won’t go too deep into details this go-around but I will attempt a visual of my experience…..

Imagine…..

For many years you have imagined visiting Hawaii. The breath-taking landscapes, the crystal clear waters and feeling the sun warm your cheeks. You start planning and saving for
this tropical paradise, dreaming of what you will do and the people you will meet. Finally, you have pinched enough pennies to afford a trip. Elated, you shop and pack and pack some more. How many bathing suits? How many bottles of sunscreen? Do I need a new pair of sunglasses? And so on and so on. Until your day of departure has finally arrived. You are glowing. You can hardly contain your excitement!

The airport is miraculously a breeze. Check-in is quick, the lines seem to speed along and even security is pleasant as you make your way to your gate. You settle in after boarding, resting your head on the back of your seat, close your eyes and anxiously await your paradise. You gently nod off in your daydreams, a gentle smile graces your face.

“Please return your trays to their upright positions and buckle your seatbelt. The captain has notified us that we should be landing shortly.” Hawaii! Oh, how exhilarating! It’s time! You have waited so long! I bet it simply just smells different! Is it going to be like the movies and a woman is awaiting every passenger’s exit, placing a lei over their head as they exit?

You joyfully grab your carry-on and await your turn to exit the plane. Slowly you move towards the door and attempt to peek around heads and shoulders hoping to get just one tiny glimpse. Your counting down now. Only five people ahead of me, now four, now three…

And finally, you have arrived to the exit of the plane. You stand in the doorway wanting to breathe it all in at once, bask in all it’s glory. You stand there, eyes closed, waiting. A breeze lifts your hair and kisses your cheeks, but strangely it doesn’t feel warm and welcoming as you had imagined. It was a chilly breeze. One that forces you to wince in shock and discomfort. As you slowly peel your eyes open they resist at the brightness, not of the glowing sun and blue skies but of white, crisp snow and overcast clouds glaring above you.

How could this be? What happened? Am I dreaming? Some one has made a mistake! This can’t be right! You are greeted by name and welcomed to Siberia…wait, what?! You protest. You pull out your ticket, yes, see, Hawaii.

“No ma’am. There has been a correction, this is your final destination and no return flights are offered. No doubts and no refunds. Buh-bye.”

Packed and dressed for the hot summer weather, you shake in the chill. You stand, stunned and confused. In your daze, your luggage is tossed from the plane and closes its doors and begins to taxi away. Leaving you. Stranded and alone. The other passengers have dispersed. While they seem just as confused as you, they pay you no attention and scramble to find shelter and comfort from the cold. It’s just you and this suitcase of swimsuits and sun-hats, all of no use in this unfamiliar and desolate place.

In the days and weeks and months to come, you learn how to manage your new residence and way of survival. You have clawed, scrounged and fought through it all and now even seem to have found a rhythm and an acceptance of your fate. You still daydream and wonder about Hawaii. What if I had made it there? What would I be doing? How different things would be….

And so, this has been my path. Or, at least, the beginning of it. The harsh reality and eventual acceptance and ownership of a plan gone wrong, a destination never reached. Within hours of my son’s birth he was wisked to emergency surgery; and after a long recovery and many tests, my first born child was diagnosed with Cystic Fibrosis. I would later learn through consultations and reading material what this meant for him, for me and for our family……Welcome to Siberia.