As if I was not afraid

The morning after his open hehttps://defeatdespair.wordpress.com/wp-admin/post.php?post=6354&action=editart surgery, I asked Matt if he was OK and gave me his traditional signal to reassure me.  Washington DC, April 2014

The morning after his open heart surgery, I asked Matt if he was OK
and he gave me his traditional signal to reassure me. Washington DC, April 2014

“There were all kinds of things I was afraid of at first, ranging from grizzly bears to ‘mean’ horses and gun-fighters; but by acting as if I was not afraid I gradually ceased to be afraid.”Theodore Roosevelt

“Make believe you’re brave
And the trick will take you far.
You may be as brave
As you make believe you are.” Oscar Hammerstein II

Now that Matt is an adult, we are no longer able to shield him from discussing the realities of his heart condition.  His cardiologists understand that his disabilities do not preclude his ability to participate in his own care, and I have appreciated how they never talk down to him.

Matt’s heart surgery in late April, the fifth time his chest has been cut open, was his riskiest since the first one he had as an infant.  During the months leading up to April, and to some extent during the years in which the doctors were putting off the inevitable, there was much talk about the reasons for postponing it as long as possible.  The situation is complex, and the medical team wanted us to be aware of the difficulties inherent in the goals they hoped to accomplish during the long hours in the operating room.

This time, Jeff and I saw a difference in Matt that told us he understood the gravity of his medical situation.  At his cardiology appointments, where he always shares jovial exchanges with the staff he has come to love, he was also pensive, almost somber as his case was being reviewed.  We saw signs of this quiet reflection at home, too, in the weeks leading up to surgery.

Whenever I would ask Matt if he was afraid, he would answer either “no” or “maybe” but then go on to another subject.  He seemed determined to keep his fears (which must have been many) under control.  During the difficult weeks that followed, he was mostly stoic in the face of tremendous pain, and apologetic about asking for help when he needed it.

Matt has shown a similar determined optimism about Jeff since he was diagnosed with cancer.  Though at times he has clearly had anxiety from watching his Daddy suffer (particularly when Jeff had an extreme adverse reaction to chemo that left him covered in painful lesions) he continues to affirm his belief that his father is going to get well.  He knows from hard experience that illness hurts, and that it often gets worse before it gets better.

Some might conclude that Matt’s optimism is related to his developmental limitations, and perhaps this is true.  But I need look no farther than Jeff to know that Matt’s courage appears to be a genetic predisposition, one that has prompted more than one person we know to observe “like father, like son.”

I’m sure you know people such as Jeff and Matt, who minimize their own suffering and go about life with great determination and strength.  Such people are wonderful examples to those of us who have thus far been fortunate enough to avoid such medical trauma.  Courage, like many other admirable traits, feels a bit contagious at times, a reassurance to us that it’s possible to survive and thrive.

If there’s anything frightening you today, I hope you will remember Roosevelt’s advice (or Hammerstein’s) and “fake it till you make it.”  Your courageous actions will plant seeds of inner bravery, in yourself and others.

One year ago today:

Ultimately worthwhile

 

56 Comments

  1. Ann

    Prayers that dear, sweet Matt is well along the road to recovery from his surgery.

    • Thank you so much, Ann! Matt is doing quite well so far. We see the electrophysiology cardiologist again on Tuesday and I’m hoping for more good news.

  2. Beautiful post Julia! I keep Matt and Jeff in my prayers. I understand. ♥

    • Thank you M – I know you have “been there and done that” and I appreciate the way you encourage others who face difficult or frightening situations!

  3. Julia, I am keeping Matt and Jeff in my prayers. I know that courage is hereditary.

    • Thank you, Cherie. You and Ron are in our prayers also!

  4. When discussing life and death situations with my doctors and psychologists I tried to explain that once you’ve come back from the brink any subsequent episodes are without fear. People who fear death aren’t ready to die. People who would welcome death aren’t afraid to die. I know, without a shadow of doubt, that God controls my clock and I won’t leave this world without Him desiring me to come home.

    • Bob, I think that’s so true. I also think that the older we get, the less fearful death becomes. A long life is a mixed blessing, since it means so many goodbyes with those who die first. Having said that, I think most of us would choose a long life, but as you say, the assurance that we are in the hands of divine wisdom is what counts most.

      • I don’t think I have a death wish I just believe everybody wants to go to heaven but aren’t willing to die to get there. 🙂

        • How true. For most of us it’s “I want to go to heaven, but not yet!!!” 🙂

  5. Marvelous attitudes in the face of such trials.

    “In the darkest night of the year,
    when the stars have all gone out.
    Courage is better than fear,
    faith is truer than doubt.”-Washington Gladden’s poem-(“Ultima Vritas”)

    I referred to this segment taken from the above poem, in the opening of my autobiography, “The Little Red Chair,” regarding my experience with polio. I return to it often.
    -Alan

    • Thanks a beautiful verse, thanks for sharing it! I had never read it before.

  6. raynard

    Julia, while I dont really care for 1 explosives, Knifes, or rollercoasters, I struggle from time to time with”the fear of dying before I have a chance to say goodbye to friends and family.As I listen to some online french Jazz eating some cookies a young lady in my church baked, trying to get ideas. For what you say, 2 weeks till my church’s picnic and bakeoff.. Learning toward the truffle simple and easy but “going to put my spin on it. be blessed

    • Raynard, I think we all fear leaving people behind, especially if we were to die unexpectedly. I guess the best we can do is try to live each day with the awareness that nobody has any promise of tomorrow. I try never to leave any family member for a short or long time without saying “I love you” before I say goodbye. I suppose some might say that’s superstitious but we never know when it is the last time we will be seeing someone. On to happier topics…I can’t wait to hear what your “spin” will be this time! 😀 I’m no fan of fine dining and expensive restaurants (I have very cheap humble tastes in food; Cracker Barrel is my favorite restaurant) but some of the best eating of my life has been at church potlucks and picnics!

  7. Carolyn

    Enjoyed reading this blog.

    • Thank you Carolyn! You are another great example of courage through the tough times.

  8. Amy

    I love this photo. I loved it when you sent it to me the first time. Matt has always had a courageous heart. (if not a completely healthy heart) Your whole family has always been a strength to us. I remember Jeff teaching a Bible class using a book by Willard Tate. He talked about how life is hard for everyone but that a life lived with hope and faith is a fulfilled life. If figured he was a guy who knew what he was talking about since he was a happy faith filled guy who had faced many challenges and overcome a lot of obstacles. WOW, all that seems a drop in the bucket compared to what he has come through since that class. I am sure that is what he passed on to Matt and I know he passed a bit of it on to me. Take care. God bless you all.

    • Thank you Amy, I’m sure we were all too young and innocent then to dream of what lay in store for us. Mostly good but lots of heartbreaks too. Thanks for being with us through it all, and for your generosity with each one of us. I will always be grateful for the love you have shown Matt from the very beginning.

  9. Carlyle

    Julia,

    A very encouraging blog today. Having said that, I am forced to confess that emulating the courage we have observed in your husband and son is a daunting challenge. One which I am not at all sure I can meet..

    • Daddy, I think you are meeting it every day! And have been doing so for a long time. Not just where your own health is concerned, but in the sacrifices you have made to take care of others whose needs you have always placed before your own. I love you.

  10. Sheila

    Julia, I feel so confident that Jeff and Matt are good for each other and actually arm each other with a strength to defeat their particular health issues. I also remember that Drew was by Matt’s bedside. I love the courage that I see in the photo. 🙂 Thank you for sharing such a personal story. Hi to Matt and Jeff.

    • Thanks so much Sheila, I appreciate your being with us on this journey. I agree that Matt and Jeff keep each other going. Those who are closest to us all seemed to have the same immediate reaction to the news of Jeff’s diagnosis: what on earth will Matt do without his Daddy? They are so very close. We are at least a little bit accustomed to seeing husbands and wives parted from each other, as sad as that always is, but it’s a different type of situation where Jeff and Matt are concerned. I pray that they will continue to be there for each other (and for me) for many years. I’m so glad you are here with us!

  11. Larry

    Courage is a trait that is passed on by genetics but even more by the true example of a father showing the true meaning of it to his son. Passing it on from generation to generation is admirable and many more need to do the same in today’s society. Don’t overlook your own courage because it has been tested and survived thru all this as well. Matt can see courage in you also.

    • Thank you Larry, I appreciate that. I try to keep up a brave front for Matt but he sometimes sees my fears and doubts. I think he understands. At his second open heart surgery, when they took him to the OR and we had to say goodbye before they put him under anesthesia, as they walked away I heard one of the nurses asking him if he was OK and I heard him saying “Yes, I am brave.” 🙂 ❤ (He was 8 years old at the time.)

  12. Julia, thanks for sharing this courageous picture of Matt. What a brave young man! 🙂
    you’re one courageous lady…with a brave family. Blessings…
    I have a blood disorder that causes anemia…when asked how I’m doing, I reply, “good.” And I am doing good…I’ve responded to treatment…for which I’m thankful. 🙂
    ( no cure for Myelodysplastic) just comfort care.

    • Merry, I am so sorry to hear you have to deal with that disorder, but thankful you are responding to treatment. I am often caught between gratitude for medical care, and outrage at the suffering, hassles and cost it can involve. It is always good to hear the success stories, and the times when people get better from their medical care. Thanks for being here with us!

  13. xoxooxox

    • ❤ ❤ ❤

  14. The Lord sends us Angels in many forms. They help us in many ways to bestow his graces on the world, How lucky you are to have two living right there with you. The love and strength shine through your words for all of us.

    • Thank you Patricia. I needed that reminder today, as I sometimes get mired in feeling sorry for myself over the things I don’t have. Much better to reflect on the tremendous blessings. I appreciate your presence here!

  15. Michael

    I think I would have been terrified if my son faced a major surgery. It was bad enough when he got his tonsils out. He struggled against the nurse and any kind of injection. He was eight or nine at the time. My wife said the worse thing was the “going under” of the anesthesia. Of course as a parent -you want to keep up a good front, but there is also some of Mary at the foot of the cross -weeping. Was she brave for her son?

    • Michael, I think Mary was probably the consummate example of tough love and strength. I’m not sure she wept much until afterward; I think Mel Gibson got her exactly right in his film, whatever else he may have gotten wrong (which has been plenty). Mary is often portrayed as some sort of wimp, but think about it. She knew better than anyone on earth who Jesus was, and yet all three times in the N.T. when we are told of her interactions with him, she was telling him what to do. 😀 That would take some serious parental moxie. All kidding aside, I think all parents are able to endure more than they think they can. As Marge Piercy has written, “strength is not in her, but she enacts it as the wind fills a sail.”

  16. Michael

    This picture- though very brave indeed in so many ways- will probably not adorn the family Christmas card next year.

    • What family Christmas card? 😀 That went by the wayside some time ago, a victim of too many other urgent things that had to be done first.

  17. Sheila Balls

    Blessings Julia as you and your guys face these challenges. Friends have told me lately I am strong, and I don’t feel strong, but I do feel like I am managing. Guessing it feels like this for you as well. I have been reading Anne Lamott and one piece of advice she gives is “Just take the next right step.” So that is my prayer for today: “Let me(and you, and everyone) just take the next right step”. And who knows where one step at a time will lead us.

    • Sheila, your comment today helped me get something done that I had been dreading for a long time. Thank you! I totally sympathize with what you said; I never feel strong, I just manage. Perhaps managing is a kind of strength in itself. I appreciate so much your kind words and your timely reminder to just take the next step. I really, really needed it today!

  18. Medical situations bring courage up to the surface…the patient being brave for their family, and the family being brave for the patient. I’m glad you all have each other for support.

    • Thank you, Denise. We all really do keep each other going, in these ways and so many more. This is just one example of how people help themselves by helping others. Sort of like a story by O. Henry or something. 🙂

  19. I read this post yesterday with no time to then comment. I hope both your son and your husband will be ok, you all have much to challenge you right now and I was saddened to see what you are going through. I have been through similar and know all the emotions and feelings well. It’s good you have this as an outlet to express yourself and I hope you all are well supported by others close to you. Big hugs xx

    • Thanks so much W! I am always encouraged to hear from those who have been there and survived. Blogging has been a lifesaver for me and has introduced me to more wonderful people than I could ever have imagined. Truly the silver lining to all this. Cyber hugs right back to you!

      • It certainly beats isolation and loneliness in the difficult times and I remember those times well x

        • Yes, I’m very thankful! Difficulties can be so isolating.

  20. Michael

    Just kidding about that XMas card. we have not done one of those either for several years. So has Matt been inspired to be involved in health care or has he had enough of hospitals?
    Good advice from Anne Lamott and I have still not found her book- ” Tender Mercies.”
    Two steps forward and one back or is it one forward and two back- somedays it might feel like that, if you know what I mean.

    • Yes, I think it’s often one step forward and two back, or maybe even sometimes three back and zero forward. Hopefully at least half the time it’s two forward and one back. Matt doesn’t have much interest in health care topics. He’s more into music, history and lately, the weather, which he must have gotten from Jeff. They actually watch the weather channel together sometimes.

    • Sheila Balls

      Michael, look for Traveling Mercies (Anne Lamott). Smiling about the steps forward/back. I’ll settle for sideways at this point!

      • Sheila, I really enjoyed that book. I think Lamott’s journey is remarkable. Sideways is good with me too, after so many times of going backwards!

  21. You all set the bar high for the rest of us, I nothing short of ‘in awe’ to the grace you demonstrate when others might curl up and hide. Fight or flight? Not much difference between two tremendously different responses. Attitude goes a long way in how we face our worst fears. I tend to inject a bit of humour into bad situations. Some might find it out of place. I never mean to be disrespectful, it’s just a knee jerk reaction. A nervous response to uncomfortable things. It’s probably been how I’ve dealt with scary, threatening or sad moments since I was really young. As you say, “fake it, till you make it”

    “naw, I’m not scared, see, I’m laughing” That’s my inner voice talking me thru it 😀

    • I think humor can be lifesaving, quite literally. There are very intense moments of grief or danger when it’s not appropriate, but those are relatively rare. And in all the other moments of tension, worry or sadness, it can be a wonderful gift. As Jimmy Buffet sang, “if we couldn’t laugh we would all go insane.” Over the years, and especially lately, we have shared many laughs with Matt’s doctors and nurses as well as Jeff’s. I believe it’s tremendously healing and also a form of instant courage.

  22. Michael

    The idea of” make believing you are not afraid,” is intriguing. It reminds me of something I read about smiling- that if you smile you can trick yourself into feeling a little better. That if you smile you can actually start a little chemical reaction and kick out some endorphins. Sort of the tail chasing the dog? But I think there is something to it. They also say if you smile it is as good as a face lift in terms of your youthful looks as you strengthen the muscles that are
    the focus of a face lift procedure. It is also cheaper. So why not?

    • Michael, I believe (based on personal experience) that the bit about smiling is true. Practice it a little bit and see if you don’t start to notice it. I know some people feel as if they are not natural at smiling, but it’s almost always possible to think of something that will make you smile with a sincere and genuine feeling of cheer, and often when one person appears cheerful, others will pick up on it, and it will become a chain reaction that feeds on itself.

      Here’s a true story that’s kind of sad but also a great lesson. There was a man who worked as a janitor at the store in Nashville where I was employed part time working nights. He was always coming around sweeping up before closing and was cheerful and kind to everyone, always smiling. Never said much else besides hello. I assumed he had some sort of cognitive disability. Later my boss told me he was a Vanderbilt student working on some kind of advanced degree. “You’re kidding!” I said, and admitted I had secretly always thought he had a mental impairment. My boss laughed and said he understood why. “It’s a shame, but sometimes when someone seems happy, we assume there is something wrong with them!” Let’s all work to reverse that stereotype. 😀 😀 😀

  23. Michael

    Yea it does not have to be the fake plastic-“Miss America” smile.
    Prayers for Hawaii. We were there during the Tsunami alert three years ago after the quake off of Japan. People had boats out in their front yards loaded with supplies. Some feared a massive wave that would actually totally engulf the Island. The reality was much more serene- although some buildings were damaged on the Big Island. The police evacuated homes two blocks from us on the water. We were on a third story apartment level. We moved our car up the hill in tense anticipation. Much ado about nothing. Let’s hope that Iselle might be the same.
    That’s a great story.

    • Michael, Jeff and I were hoping the same thing last night. When we lived there the schools and all else was closed for a tsunami warning that never came true at all. Some were annoyed but better a false alarm than a tragedy. We can offer our kokua through prayers, and if needed, donations for disaster assistance.

  24. Michael

    There is also a blues song, B.B. King? ” If I did not have the blues-I wouldn’t have anything at all.”
    Great story about the smiling janitor.
    What was the name of Alan’s book-memoir–Little Red Chair?

    • Yes, I think you can find it here. Alan, I hope you don’t mind my posting the link.

  25. MaryAnn

    Julia, I have not been near a computer for over a week, now I MUST comment on this. Please give my love to Matt. This photo is precious, showing how strong Matt’s love is for his family. He is such a dear person! I miss MY Dentons!

    • Thank you Mary Ann! We miss you too. ❤

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