Sorry

[Blog entry created by Mark Bonnema]

Another restless night. When will sleep come?
Another coughing spell. When will the inflammation settle down?
Another bought of pain. When will we find a safe and effective pain reliever?
Another infection. When will the PICC line come out?
Another drop in lung function. When will things go in the right direction?
Just another day in the life of Ashley Ballou-Bonnema.

I would give anything for Ashley to have one good night's rest, free from the steroid-induced insomnia and coughing spells that wake her up when she finally does find sleep. I would go to the ends of the earth to find the elixir that brings peace to her lungs and ceases her relentless cough. I would spend every waking moment extracting bacteria cells from her ravaged lungs, if only I could. The disease and its slow, steady advance on Ashley's life often leaves me feeling helpless. I bear witness to the sleepless nights, the coughing, pain, and shortness of breath. But there is very little I can do to alleviate Ashley's suffering.

What can I do? How can I help? I try to offer counsel and encouragement, but I have no idea how much energy and will-power she has exerted just getting out of bed and getting ready for the day. I cannot fully relate or understand what it is like to live with the disease each and every day. I try to soothe and ease the pain by rubbing her back and aching joints, but it is merely a temporary solution to a chronic problem. The pain always returns. I try to help keep her nutrition status up by cooking meals that she enjoys and that are high in calories. Still, her weight falters. What can I do? How can I help?

Helpless
Over the years I have learned to accept my role as spouse and supporter, as the one who bears witness  to the struggle, but can do very little to lighten the burden. Ashley often apologizes to me, apologizes for 'being a burden,' or for 'holding us back,' or 'for being sick,' as though I blame her and hold her at fault for how CF affects her life. She does not realize that I am the one who feels sorry, helplessly so. Sorry I cannot do more. Sorry I cannot find the answer or the cure. Sorry I cannot make the disease and all its symptoms go away.

If you know Ashley at all, you know that she has little to no time for pity, sorrow, and helplessness. While I am confessing my feelings of helpless in relation to Ashley's relentless battle with CF, Ashley and I intentionally choose to live life with as few regrets as possible. Each and every day is a new day filled with the promises of togetherness, adventure, and challenge. How do I best help, support, and love Ashley as we daily adventure through life? By treating her like she is normal. By refusing to see her as "sick," and by never treating her as though she were incapable or a burden.

Normal

Ashley longs for normalcy- to be treated like everyone else. She wants to be seen for the person she is rather than the health condition she bears. She longs for people to relate to her according to her personality, character, abilities, accomplishments, and potential. She hopes people see a beautiful, brave, spirit-filled woman with things to offer this world. She just wants to be "normal."

While our life is anything but normal and we cannot ignore the effects of CF in Ashley's life (doing so would be life threatening!), Ashley does not let CF define her life and I very intentionally follow her lead. I choose to treat Ashley as Ashley for the beautiful person that she is. When we need to deal with the challenges of CF and face it head-on, we do. But in the moments between, we live and cherish life together.

How do I help? What can I do? Even though she is anything but, I treat Ashley as though she is normal.

How wide are the boundaries on your "normal?" Can you stretch them today? What, or who, might you see anew?

The Cover of Your Book

We have all heard the age old saying, "Don't judge a book by its cover."  The cover of the book never tells the entire story or what beautiful adventure lies within its binding.


What lies beneath the cover of my book?

What's hidden beneath my "cover."

My pages are illustrated by the scars of past PICC lines . Since last year, It seems I have had a PICC line more often than not.  To be more exact, roughly 28 out of 65 weeks, or 2OO days out of the last 465.  My arms look like a children's connect-the-dot picture.


What is a PICC line?
A peripherally inserted central catheter [PICC or PIC line] is a type of intravenous access that can be used for a prolonged period of time to deliver IV antibiotics.  In terms that are more understandable, it's an IV that can stay in long term.

Intermate.

I usually have a PICC line for 4 to 6 weeks or so at a time and do a regimen of different antibiotics, either continuously or every 8 hours.  Antibiotics come pre-measured in a small pressurized bottle called an intermate. I slip the intermates in my shirt and no one knows or can even see it.  When I am on continuous IV therapy I wear my "European satchel"all the time [a.k.a. my cross body bag/purse, but "European satchel" sounds more exciting].  Some of my favorite questions I hear when I have to wear it are:  "Do you know you're still wearing your purse?" "Do you have a weird attachment to your bag?"  They always make me smile.

Last PICC line - I bruise like peach.

During the last couple of PICC lines my Team has discussed putting in a more longterm IV option: a port.  For someone with CF, a port is discussed as an option because of the frequency of PICC lines and need for antibiotics, and running out of viable veins to keep using for PICC lines.  A port would be inserted beneath the skin in my arm near my elbow.  This connects a vein to a catheter through which antibiotics can be administered.  

 My PICC line is always hidden beneath a
 sock on my arm 
and under my clothes so no one will know.

My Team 
The wonderful people at Home Health and my CF team make it possible for me to do home IV therapy. Don't let me forget about the wonderful 2 nurses who always put my PICC lines in: I so appreciate their warm sure hands.  I am so thankful that my Team supports me and the full life I want to live: I couldn't do any of this without them.  


There are so many pages to be written in the book that is my life, and CF is not going to limit the beautiful content that is written within its pages: PICC line scars and all.  
Love to you all.



What do your pages say beneath the cover of your book?