The Great Strides Walk is coming up quickly this year and I’ll be completely honest, I haven’t done a thing to promote, raise money or prepare. I did design t-shirts to sell, but haven’t ordered them. I have registered, but my balance is still $0.

Last year, I was all up on it. I made a video for the schools. Hit all the schools up to have it shown and educate the kids on CF. I designed t-shirts…pushed them, sold them, shipped them. We all showed up at the walk and had a great time (despite a severe bloody nose for Colby and a trip to the ER…bleh).

This year, I am less than motivated. Not for lack of want, but we have been having a great year and been crazy busy with ‘normal’ life. We’ve only had one “tune-up” and they sent him home a day early on good behavior. Well, ok, not really. But, for excellent PFTs. Haha.

Last year, CF was very real in our lives. A “tune-up” every 6 (SIX!) weeks and constant worry that our hard work wouldn’t pay off.

Well, it did! He went from lung functions in the 60% range to a [freaking] 99%!!!!!!!! (There aren’t enough exclamation points in the world to express my sheer joy!)

So, am I taking that progress for granted by not commiting this year to record charitable donations? Am I a lousy [CF] mom for not pushing shirts and raising awareness? It is a serious need in our little CF community. Donations go directly to research and progress for a cure. I know it is a big deal.

Maybe I just need a break from all the hub-bub of CF this and CF that. Last year was exhausting. We had to plan around all of his scheduled admissions and work so hard to get him back up to where he needed to be. We did a month of home IV’s, which I hope to never have to experience again. Early, early mornings and late, late evenings…little sleep and infinite worries that I would fail him in some way by not doing it perfectly. The pressure was so immense.

Granted, it is only April, but we have been running at a good pace. Nothing crazy to deal with, no ‘exacerbations’ and a bit of a plateau in worries. It’s been so nice. I try not to stress about what’s around the corner, however, I know there is always a chance that things could swiftly shift downhill. Ah, the joys of CF.

Maybe I can will myself to get motivated about it, maybe I will find rest in where we are right now and keep pretending that everything is great. I won’t know until it comes down to the wire, I’m sure. (I work really well under-pressure.)

For now, I am just going to accept the peace that comes with this moment, in this quiet. It is so rare. The panic and fear will return, I am sure of it. But, for now, it is nice to focus on schoolwork and friends and housework and gearing up for another cross-country season (he is so ready to start training again).

Cheers to a ‘normal’ year for us….and prayers that this holds for a while…..

fev1

boss

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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?

Just Breathe

Posted: April 17, 2012 in Uncategorized
“Have you taken your meds today? It’s time to do your smoke medicine. Do you want the vest or manual chest PT? I think you should wear a mask today at the store. How many times have you pooped today? Make sure we don’t forget your meds for school. How about your puffer? Did we do that today? Please bring me your milk bag and extension tube……..”And so begins another day. These are the conversations between mom and son that have essentially become co-workers, fighting CF. All the strange things that must be considered and monitored. I wonder what it feels like to be a mom that doesn’t have to inspect a 9 year olds poo. Or get to just worry about friends at school or grades. When there’s a sniffle, just to make chicken soup and baby their child, instead of sheer panic. I wonder what that’s like. Because my days are quite different than most mothers. They are filled with medical regimens, physical therapy, inspecting and listening, worrying and fretting a hospital admission and administering countless prescriptions………… sometimes I wish I could just breathe.

In 2002, my first born son came prematurely and in distress. I barely held him before he was rushed to Childrens’ Hospital from the small town hospital he was birthed at in Jacksonville, AL. At two days old he had his first surgery for an intestinal blockage. The doctors told us that there was a long road ahead of us, but not to worry. They were going to take good care of him and I just needed to get some rest for the journey.It was a month before my tiny little boy started to turn the corner. We were finally moved to a private room and out of the special care unit. I was elated to get to hold him anytime I wanted and put him in his clothes. However, just as we were settled into our room and enjoying progress and each other; his DNA tests came in…..Cystic Fibrosis. I had heard of it, but had no clue what it was.

Cystic Fibrosis (CF) is a terminal, genetic disease that affects many organs of the body. The disease causes the cells of the body to not allow salt to travel into the cells and effectively throughout the body. The lack of salt in his cells means that fluids in his body become thick and sticky. Mucus becomes our enemy and hides away in the lungs, the digestive system and the reproductive system. The mucus plugs ducts that prevent semen from being released; therefore, he will be sterile. The mucus plugs the ducts in the pancreas that release enzymes and break down food; therefore, his body cannot digest food on its own. Mucus will soon inhabit his lungs and the body will work against itself to try and fight it, creating permanent damage and eventually destroying the lungs.

For the first four years, CF was really little more to us than some capsules sprinkled on applesauce before each bottle or meal. These capsules had man-made enzymes that digested his food. Of course, not perfect and he still had trouble with greasy, messy stools but he was gaining weight and thriving. I was encouraged that he had no lung infections and easily fought off colds through those years. Maybe he was the exception! But the doctors assured me, it’s not IF it’s WHEN.

At four, my son was hospitalized for the first time for what we know affectionately call a “tune-up”. It is a period of 10-14 days of breathing treatments, IV medications and chest physiotherapy (or chest PT) that helps loosen mucus from his lungs. He sailed right through it. Encouraged still! We had to be the exception!  

As the years passed on, the “tune-ups” became more frequent; the medicines added to, the at-home regimen lengthened. Getting a cold became harder for him to fight off and almost always meant a hospitalization was imminent. It’s not IF, it’s when.

Now at age 9, this disease has officially taken over our lives and daily thoughts and worries. Lung damage has been confirmed and it’s now a fight to recover what can be and maintain the rest. We have had three “tune-ups” in the last 6 months and now plan on another three for the remainder of the year. Doc says it time to fight. Based on the most recent tests, his lungs are operating at around 60%. The remainder is damaged and unhealthy, but he is optimistic that we may be able to recover some of that. A portion is already permanent and irreversible.

While our fears are growing there is hope in sight. With the help of the CF Foundation, researchers have been relentless in finding a way to move the salt in the bodies of CF’ers more effectively and have by all accounts found a “fix”….for 4% of the CF population. My son is not included in that group. We must still wait and fight. It is hoped that in the next 4-6 years that there may be such a fix for his strain of CF. But, the damage done until then cannot be reversed. What is done, is done.

So, we hold fast. Praying that the scientists, the researchers, the doctors are successful in their quest. I can’t even fathom the possibility and we can’t rest until then. We can’t get complacent. We can’t stop fighting. But, if AND when, I will finally be able to make chicken soup when colds move through our home, I will be able to relax in the evenings and not have to do breathing treatments and chest PTs. I will not have to shook my other two children to grandma’s house while we weather another “tune-up” and not have to schedule our lives around air quality and medical equipment.

I will be able to just breathe.

And my son will be able to eat without pressure, poo without inspections, play without worries of germs, sniffle without fear of a “tune-up”.

But best of all, he will be able to just breathe.

Colby’s CF Education Video

“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.

Aside  —  Posted: February 18, 2012 in Cystic Fibrosis, mom
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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??

Posted: October 19, 2011 in Cystic Fibrosis, mom
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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.

Posted: October 7, 2011 in Cystic Fibrosis
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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!

Posted: October 6, 2011 in Cystic Fibrosis
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