Archive for the ‘mom’ 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??