Our New Normal [s] » Our little family's realization, that there is no normal

Day 19: Of disappointments, setbacks and beat downs – Part 2

Yesterday, we talked about bitterness.

My recipe for a great “Cuba Libre” calls for a little bitterness (Angostura Bitters to be exact), but only two drops. Other than that, bitterness in our lives is not a good thing.

You know yourself and you can tell better than anyone which path you have chosen after your big disappointment. But a quick self-audit is always helpful and takes very little time.

You may have seen bitterness start to sprout in your life. You may have noticed it in your husband (or wife). You may have seen it your children.

It caught me by surprise. Unlike David and the men from our story, who cried until they were all out of tears, I tried not to cry at all. “I want to be strong for my family!” type of thing. But under the surface grief was dripping into bitterness and anger.

For me it started when feelings of “this isn’t right” gave way to “somebody should do something/do more for us”, or fill in the blank “somebody owes me ”, “I/we deserve ”:

        1. More help
        2. More sleep
        3. Less bills
        4. A little break
        5. A better car, vacation, house
        6. More patience
        7. More understanding
        8. More praise

Gauge your internal dialogue. Does is ever drift in a negative direction? It may not be much and it may not be often, but it could be the beginning of destructive roots that will sprout later.


Let’s Talk About The “But”

In verse 6 of 1 Samuel 30 we read, “But David…”

All the men did one thing (and ended up bitter), But David didn’t. He went a different route.

From personal experience, having traveled both, let me tell you about David’s choice, as I am discovering day by day.

I see that “but” which differentiated David and helped him remain a great leader to his troops, a great father and husband for his family, and eventually made him a great King for his nation, was based on two actions. I will start with the second one first.


There is a point in our story, when “David inquired of the Lord, saying, “Shall I pursue this band? ” (verse 8)

You’ve got to love David’s attitude!

He lost his family. He lost his home. He lost his belongings. He lost the confidence of his team. He lost his very last tear. He lost everything, EXCEPT his will to fight.

Read that question for what it is not!

His prayer to GOD was not, “give me the grace to endure this.

His prayer to GOD was not, “help me to live through this.”

His prayer to GOD was not, “make me patient to…”

David’s gets down on his knees (to pray) but he is on his feet fight, to go after the wrong, to chase the evildoers and bring them to heel… He is rearing to go! He is only praying to make sure that his is not acting irrationally or simply seeking revenge, after all he knows the vengeance belonged to his GOD.

But there is no doubt in my mind that he is raging mad. And his anger is pointed in the right direction.

We have said this before and we will say it again before this is over; the original reason to grieve is legitimate. There is an injustice committed. This situation is not right. As I type these lines, my wife is comforting our daughter who is afraid students will make fun of her skin lesions in her new school, where she will be going this year because our budget is too tight to send her to the private school she loved.  This is not right!

How about this? JDM’s biggest trigger is UV rays in sunlight, and we live in the “Sunshine State.” Try to think back to when you were seven years old. Can you imagine being that age and not being allowed to go outside? When I was seven my mom would kick me out of the house! Instead of anticipating with excitement, being out all summer long, dreading summer?

Our daughter is obligated to stay indoors most of the day long. This situation is just not right!

David got mad at the right thing. And, you know what? I am mad at Juvenile Dermato-myositis!

Not just mad, I’m mad as HAIL!!!! Say it wit’me! MAD AS HAIL!!!!

Going throughout our ordeal, I have heard some many people say, “Everything happens for a reason.” Usually, in a context that denotes that there is nothing else to do. A settling attitude that tells me “this is the way things are going to be.”

Well, maybe…. Everything happens for a reason … Maybe. May be….

But, I am not so convinced anymore. After reading a little bit of N.N. Taleb, you have to know that this world is full of randomness and not everything happens for a reason. In fact, plenty of things can have no rhyme or reason at all.

Like your (our) child conquering JDM. Or your child conquering (whatever).

GOD can work some “magic” in the midst of this horror and give reason to a senseless situation, but there is nothing nice or soft about this blasted disease. There no good cause to “accept” it or any rationale to just “cope” with it.

I hate this disease! And I’m mad as hail about it!!!!

I hate what is has done to my daughter, and to our family. I hate the stress it causes my wife. I hate how impotent I feel facing it. I hate how doctors are dumbfounded and trying to appear knowledgeable, as they experiment on our daughter. (Our doc. admitted that with these types of illnesses that they mostly just don’t know- there is no formula).

(BIG) But….

  • I am not mad at the doctors. They are doing their best with what the can. And they are doing a great job. I am really thankful.
  • I am not mad at myself. I am trying to pray for and hug my daughter more.
  • I am not mad at my wife. She has become the manager of a dream team of allopathic and naturopathic doctors and nurses, while keeping the children at peace and doing well in school, while running a business and still serving in several areas (you are reading one of them).
  • I am not mad at my family. We are all in this journey together. Some of us have visible and discernable conditions. Others have to deal with what lies beneath.
  • I am not mad at my daughter. Maybe like a teenager, between the meds, her own fears and the symptoms of this bloody JDM, she cannot be her real self. I cannot be mad at her mood swings. I cannot be upset at the way she diverts attention from her worries by making HUGE dramas out silly things. She is fighting and winning a tough fight. She has a lot on her shoulders for a seven year old, little princess.

So, I realized I had been getting bitter and angry at the wrong subjects. But, like David (I hope), I have decided to pursue the “bad guys” with all I’ve got.

Come back tomorrow for the conclusion of: Of disappointments, Setbacks and Beat Downs

August 7, 2013 - 9:06 pm

Julia Goguen - This blessings I receive from this man doing everything he does with excellence is a situational gift from God due to the battles he fights. God is faithful.

August 7, 2013 - 11:49 pm

Sissy Taylor - Thank you – I love hearing the “dad” side of this.

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