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CF Mental Health

WHY is Mental Health so taboo in our society? So difficult to talk about?  I don’t know, but…

This is a question that I have often wondered. Some people literally RUN from the the word Counselor.  Try telling a parent that they need counseling for a child, or better yet a couple that they need counseling for their marriage?  (Side note, Paul and I have gone to marriage counseling yearly and view it as a way of “checking” on our marriage.  Early in our marriage a pastor explained it to us in a simple way.  You would never drive your car daily without doing at least yearly check ups or tune-ups a couple of times a year.  And, isn’t your marriage and mental state so much more important than a car??  That has stuck with us and we see value in it.)  However, people often feel like a failure or that they should somehow be able to fix themselves with issues that relate to Mental/emotional issues.  NO ONE that has had cancer feels like they should have been able to fix themselves.  Or someone that has had a compound fracture thought that they could perform surgery to straighten and fix a bad break.  Yet, when it comes to the mind, emotions and feelings we struggle and battle with feelings of inferiority and a complex that if we just work harder, we can cure our minds.  Funny thing is, EVERYONE I have ever met- has a mind.  And truly no one that I know has a simple, uncomplicated, or easy life.  Maybe seasons of life are easier or more difficult-but we all have stressor, and we all have complicated lives at times.

Me and my sweet girl on a quick date after our first counseling appointment.

There is no doubt that Cystic Fibrosis throws a whole new level and struggle on mental health.  It has taken me a while to write about this area of CF care, but I feel like it is important to be vulnerable.  Not only for us, but for others struggling with this monster of a disease.  I hesitate to share and have actually pondered sharing for several days because I desperately wanted to protect my family, but also because there is a part in all of us that wants to look like we have it together.  Well guess what…WE DON’T!  We never have, and likely will not this side of Heaven!!  If you talk to me in person for 5 minutes you will full well know that the struggle is real.  But, I also hope you will sense in that 5 minutes that our hope and strength comes from absolute reliance on Jesus.  We live by the grace of God’s love and provision every day.  Yes, we trust in Jesus.  We absolutely hold tight to His promises.  But, our hearts struggle greatly dealing with cf…sometimes daily.

Mental health, while somewhat new to us, is something that we have been familiar with for several years now.  We began seeing a counselor several years ago for our son Caleb.  His level of anxiety related to life was pretty high.  As we began evaluating this we began to see a connection to the high level of stress with our lives surrounding cf.  Since Rachel was born, there has been fear surrounding the frailty of her life.  He worried about her and struggled wondering if she was going to die.  CRAZY hard thing for our kiddos to have to worry about at such a young age, but unfortunately sickness and a shortened life because of CF is a reality.  And, sadly Rachel started out pretty sick which didn’t help.  Caleb is/was one of our most sensitive kiddos, so it made sense that he would feel, and act on these strong and powerful emotions.  Understandably, not always in the best way.  However, through the process of learning new behaviors of dealing with emotions and fears Caleb has made some good solid progress.  While we as a family have a long way to go, counseling has been wonderful for all of us as an outlet to help handle the stresses of such an awful disease.

Now onto Rachel.  I have seen the research about depression, anxiety and fear present with cf.  Really, how can those emotions not be present?  After all cfers live with a disease that is trying to kill them every day of their lives!!  A couple of months ago before Rachel’s surgery I thought about the fact that the adults I see are either fully engaged in helping, serving and encouraging others with CF, or are very bitter and angry people.  There doesn’t seem to be many in the middle.  Of those that are helpful, it is no surprise that most of those also have a strong relationship with CHRIST which is pretty amazing. There are many coping mechanisms, one of which is to make light of the burden of cf, and I oddly enjoy the humor in the adult cf community which is definitely morbid and slightly off.  I am sure it comes from having a life full of unrelenting times of feeling powerless, humiliated (just from the normal cf mucus crud coming out of not to mention the countless bathroom experiences that could make the old cringe) and overall inability to stop this raging disease within of cf.   I have been amazed at the older cfers ability to cope.  They are some of the most incredible people I have ever had the privilege to interact with.  And, just for the record, I do not understand what it is to have cf, and NEVER WILL.   I can only observe from the outside.  I observe with my whole heart though as it beats outside myself in another.  My love overflows for one whose battle I can not fight…but will do everything within my power to ease…if only a bit.

We went to Rachel’s first counseling appointment on Thursday.  I WAS IN NO WAY READY FOR THE DEEPTH OF EMOTIONS that poured out from this first appointment.  I knew this guy was the right one for Rachel when I watched him work with Caleb.  I knew that he had a way about him. And through much prayer, felt the encouragement to see if he would work with Rachel.  He agreed.   He had a familiarity of cf that I saw a glimpse of with Caleb, but…he allowed a deeper insight into during Rachel appointment.

Entering we started out with the normal stuff.  What are your favorite things, what do you like to do?  She was pretty quiet and of course full of smiles.  I have come to know that fearful look that she hids well behind that contagious smile.  I have seen it, but it was not until her latest surgery that I really understood it a bit better.  When she was barely able to stand up, or sit up from pain and yet a doctor would come in and ask her how she was doing- I saw it.  She would force that smile and say she was okay.  That was the final kick/inclination that I needed to find help for her in managing not only the physically aspect of this disease, but the emotional and mental part as well.  After the quiet introductions, Dr. went right into it.  He asked her what she thought about having cf?  He asked if she ever gets tired?  Tired of acting brave? Tired of the demands of cf?  The tears began to creep immediately!  Oh, my heart broke for my sweet girl who sat beside me struggling to keep it together when someone other than her family allowed her to take off her mask of togetherness.  To be real and validate that cf is an awful disease and that he felt and spoke true compassion for all that she had to struggle through with it.  He did it in a way that acknowledged the pain and suffering that was there but without pity- only an attempt at understanding.

He then went on to tell Rachel that his best friend growing up had cf!! WHAT??? He hadn’t disclosed that part to us in working with Caleb.  He spoke with Rachel about her enzymes and when his friend first got his vest after years of watching the parents “beat on his back”.  They all sat around watching it in amazement at this vest machine that now did the same thing.  Rachel smiled at the familiarity he had.

Jumping off a bridge into an icy mountain stream. Brr. My girl did AWESOME!!

The Dr. went on to ask Rachel if she felt like she was winning with cf?  He went on to inform her that she was winning an internal fight.  A battle few people knew or could relate too!  I told him that a sweet older friend of mine with cf described cf as the monster within that was trying to steal and take her life and breath every day.  He pondered that for a moment and said that was one of the best descriptions of cf that he had heard.  He asked Rachel again if she was winning?   He affirmed her saying that he knew she was winning.  The fact that she gets up day after day and does the things that she needs to do to fight the monster within was evident.  The fact that she takes her enzymes and does her treatment every day (even if she has to be reminded 5 times).  Those are winning actions.   He then went on to ask about some of her favorite things.  She couldn’t think of any, so he asked me to describe her.  I told him that she was extremely curious.  Hated to miss out on any detail.  Loved to be the first to “know” just about anything.   First to get the mail.   See who is at the door.   First to know who is on the phone.  She has been affectionately been called, “Nosie-Rosie” at our house.  She also loves adventure and works hard to overcome her fears. (She told him how she jumped off a bridge in Wyoming this year.  She was pretty proud of that one. =)  Add to that the little details about how she is quick to kill a spider or bug to protect her sisters, or go through scary spots to help others. We also talked about how Ms. Rachel hates to miss out on anything.  She constantly wants to be in the middle of EVERYTHING.  Working out in the yard this summer she was one of the first out there to help and one of the last to stop helping (despite the heat and mom’s uneasiness about the dirt and danger to her).  The Dr. looked at her and got this huge smile.  He asked if she thought that any of that had to do with her having cystic fibrosis?  The question kind of struck us both a bit.  He then went on to say he was certain that most if not all of those character qualities were shaped by cf.  He pinned it down to…

LIVING LIFE WITHOUT REGRET!

He encouraged her with the fact that she has likely lived more true in her 11 years of life than most people do in a lifetime.  I didn’t quite understand what he was saying until he went on to say that most of us get to the end of our life and regret not doing this, or that.  Not jumping off that bridge when we had the opportunity to, or being too afraid to face our fears.  Rachel knew her life and health was going to be challenged and likely much shorter than the average person…so living in the present was an act of  bravery.  A way for her to fight cf by living in the present.   Nothing like instant tears for both of us!  Whew!  Hard to hear those words aloud from another.  We think about her health, and worry over her life more than I can express.  We try very hard not to, but honestly I don’t know how to do a better job than we do some days.  Despite great advancements in CF, there are still young people taken every single day!  (I just read of a 17 year old this week that was given a clean bill of cf health about three weeks ago and came down with pneumonia and three weeks later is gone! Those are heartbreaking realities in the cf world.)   The brevity of life is before us CONSTANTLY!

The Dr. continued to delve DEEP.  He asked her if she ever worried?  Her sweet smile looked at me a nodded. He asked what she worried the most about.  She was pretty quiet, so he prodded a bit more.  He asked if she worried about her health?  She nodded.  He asked if she worried about getting sick?  She affirmed.  He encouraged her that it was normal to worried about colds, hospitalizations and sickness with cf.  He then went right to the heart of it.  He asked if she ever worried about dying.  At that, she was completely undone.  It was in that moment that I realized despite working so very hard on her physical health, we have completely ignored the frailty of her emotional and mental health.  Sitting beside her I was hurt and broken in a way that I have not experienced before.  I could hardly speak.  My sweet, precious baby girl has worked so hard to put on a brave face for others.  And, sadly, even for me!  Very rarely do we “allow” REAL TALK.  Not because we don’t allow it, but because we are so busy with the tasks of DOING, that we don’t take the time to hear, sense, and attend to her brokenness caused by cf.  All through the appointment I was fighting tears and praising the Lord at the same time.  Praising God for bringing us to this point of open communication.  Praise for the recognition of a HUGE need in my girls’ heart!

His question on the end of that portion tore my heart out…he asked her, “How do you want to be remembered?”

He went on to say, “We pretty much know what is going to take your life, but how will you LIVE?  What Will people remember Rachel for?”

WOW!! Talk about facing a reality and emotion that I  PUSH WAY, WAY DOWN in my heart.  I think about the brevity of her life.  I fear her death more than words can say.  I fear all of my children dying, but somehow knowing that there is the monster of cf within one, increases the fear in ways that NO ONE can understand unless they have walked a similar road.  Rachel and I both sat there wiping tears.  HARD, HARD emotions.  But so incredibly good to bring them to the surface.

After talking a bit about death and him assuring her that it was okay to talk about these very real worries and fears.  I mentioned to him that very young she talked about death every once in a while and it was hard for me to hear.  I remember asking another older cfer if they remember thinking about death when they were her age?  My friend admonished me that Rachel knew more than she let on to.  My friend knew about her own mortality at a very young age and tried to hide it from her parents.  She remembered her mom taking phone calls from the doctor and going in the other room and crying.  She said that she always felt so incredibly guilty for causing her family so much pain and heartache.  As I was telling this story, one that I am pretty sure I have never told Rachel, the Dr. asked Rachel if she ever felt guilty?  She started sobbing hard and nodded.  Dang CF!!  I have worked so hard, but a reality struck hard…I have also missed so much at the same time.  I assured my girl that there has not, nor will there be a day that goes by that I am not incredibly proud, grateful and eternally thankful that I get to be her mama.  Hard words to choke out through my own sobs.  I have always felt like I was trying to protect her heart.  This time of REAL communicating showed me that I need to remind her that no matter how many hours I sit on the phone trying to fight for medication, the thousands of dollars spent each month on her care,  the thousands of hours I have sat by her side doing treatments and preparing meds, the frustration that I sometimes feel at all the work that must be done…they have ALL BEEN WORTH IT!!

SHE IS WORTH IT!!
EVERY!
SINGLE!
PART!!

The Dr. was AMAZING.  But more importantly, I felt the presence of the Lord with us throughout this whole appointment.  This journey, her journey, our family’s journey…it all has a purpose.   As painful as it is at times, I am confident that there is purpose in the pain.   I have glimpses of the Lord’s goodness through it all.

At the end with genuine emotion the Dr. told Rachel that it was an honor to meet her.  He also asked Rachel if she would consider allowing him the privilege of working with him through the pain of cf.  He very humbly encouraged her that while he would in NO WAY make cf stink any less, her breathe any better, or cough less, and honestly he could not change one thing about the hardships and trials that she had ahead.  He was hopeful and confident that he could help her get to a point of being able to deal with these very big and heavy emotions in the healthiest way possible for her.  She smiled that beautiful smile of hers and took a deep breath.   Bravely, she was ready to move forward!

This will be a long process.  I surmise, a painful one at time.  I mean, after all, who likes to think, talk, process their own illness and death.  Hard for yourself, but…a different kind of hard for a parent.  As a mama, I would do anything I could do to take the pain of cf away from my girl.  The thought of losing her to this disease someday…words can’t express that pain.  Now we talk about her being the oldest cfer ALL THE TIME!  But, I also feel like there is hopeful wishing, and there is the reality .  We DO NOT know God’s plans for her.  But, there is wisdom in being able to express and accept the road ahead.  If she is one of the oldest people with cf, she will still have experienced a lifetime of her peers dying far too young.  She will loose friends, and fight the mental battles that come with that.  I CAN NOT IMAGINE!  As one of my older cf friends recently wrote, she has lost more friends with cf than she could possibly count.  That is heartbreak on a level that you and I will never know or understand.  Then to know that it is the same battle that is waging within.  HARD, HARD stuff to deal with.

I can only hope and pray that our actions will help our girl to navigate the current, perilous path of life with cf.  Hoping in the Lord to be gracious, kind and faithful.

If you think to pray for Rachel this next week we would appreciate it.  She goes back to repeat her pft’s on Tuesday and we will know a bit more what our next couple of weeks will look like.  If her numbers are higher, we are good for now.  If they are not, we will do our first “Club Med tune-up experience”.  God is good and we are trying to prepare our hearts to trust Jesus through it all.  Rachel turns 12 next Sunday.  We really, REALLY don’t want to be in the hospital for her birthday, but we also want to do what is best for our girl.  A Hard place…but trusting in JESUS for He is our Hope and strength!!

 

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One Response

  1. Tears are flowing as I read this. You write your heart down so effectively. I cannot imagine what you are all going through each day.

    I am however encouraged by this to possibly seek a good counselor. So many things that are taboo in the Christian community. Constant pain wears on a person no matter (probably especially) how well they cover their pain with a smile. The Lord wants us to be faithful to Him and joyful through our trials. Your family is such an encouragement to those around you!

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