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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

What dog are you feeding…?

_MG_1743A constant question we are asked is “how are you guys doing?” I know the question is almost always referring to either Isaac and/or Matthew. There are varying degrees in which we answer that question. Isaac’s medical and Matthew’s “creativeness” would bog anyone down if we went in to all the details. Most of the time we keep it to the short version of good or we need prayer for a specific. There a few people who are in our tighter circle that the question is more directed to the rest of us…and uncomfortably, toward Theresa and me. I say uncomfortable because we are not always doing “fine”. It is a hard thing to admit that we don’t always have it all together. For those not close to having to directly care for a special needs child, a sibling or perhaps an ailing family member or parent, there is a common term called caregiver fatigue. Yep, we have it…a lot. Caregiver fatigue can consist of several things and can be quite varied in intensity. The best way to describe it is the feeling of being trapped. Theresa describes it as a feeling that everything ultimately defaults to her…medications, appointments, therapies, consultations, nursing schedules, etc., no matter how much we help with these things, she feels and absorbs the brunt of what doesn’t get done. I have the same feelings about being the primary provider for our family…neither one is more important (or easier) than the other. That is where the trouble can begin.

I am going to be vulnerable here. One struggle within me is that feeling of entitlement of taking a break when I have just finished a long day at work… I am the provider but that doesn’t mean my obligation ends when I leave work. I have those kind of days where I am physically and emotionally exhausted, where I have calculated and conserved just enough energy to make it to the recliner and am ready for my relaxation and break. When I get home there are times I am faced with the same look from Theresa, the same kind of look in her eyes and an unspoken scream of “I’m tagging out, it’s your turn”. At that point I am left, we are left, with the decision of doing the right thing and deciding who is going to be “tagging in”. We are both tempted to begin sharing our responsibility lists of the day and compare who has done more or who gets a break first. The competition of who is more deserving of wearing the serving crown. Yes, it is a battle of the flesh…

So I say, let the Holy Spirit guide your lives. Then you won’t be doing what your sinful nature craves. The sinful nature wants to do evil, which is just the opposite of what the Spirit wants. And the Spirit gives us desires that are the opposite of what the sinful nature desires. These two forces are constantly fighting each other, so you are not free to carry out your good intentions. but when you are directed by the Spirit, you are not under obligation to the law of Moses. Galatians 5:16-18 New Living Translation

Preach it Paul…I know exactly how that feels. I just finished a book by author and speaker Ken Mansfield titled Stumbling on Open Ground: Love, God, Cancer, and Rock ‘n’ Roll. The book is about Ken’s two bouts with cancer and the honest and open discussions he had with his God as he battled through the journey of the treatments. He said this about the struggle of doing the right thing:

I am like Paul in that I try to do what is right. I want to be obedient and pure, and yet I have these thoughts; I behave in ways that are outside God’s purpose, outside his ways, outside his pleasure. I want to be pleasing to him. I want to be good and godly, but then, like a fool I do the very things that he and I both do not want me to do. I go bonkers with my stupidity and he keeps loving me. What is wrong with this picture? Maybe I should ask myself, What is right with this picture?

“I go bonkers with my own stupidity” now there is a phrase I can relate to! I get that feeling as soon as I start the caregiver competition of who deserves a break more. And still, “He keeps loving me…”. I love the story Ken went on to share, a story he heard as he grew up near an American Indian Reservation. The story is about faith vs. fear…these two are always at odds. Just as doing the right thing or the wrong thing:

One of the elders from the nearby Nez Perce reservation used to tell the story about an old member of the tribe who had become a Christian. His name was So-bo-ta, and a few months after his conversion he asked the pastor who had brought him to the Lord if he could meet with him. He told the pastor that he was having a hard time dealing with a personal struggle in his Christian walk and that he felt like there were two dogs fighting inside of him. He said on dog’s name was Faith and the other Dog’s name was Fear. He said these two dogs were constantly battling inside him, and it was driving him crazy. The pastor looked at him intently, thought for a minute, and asked, “Well, So-bo-ta, which dog is winning?” The old Indian squinted his eyes, stared off into space as if watching a movie, and then answered in words so soft that they were almost inaudible: “I guess the one that I feed the most.”

What dog am I feeding the most? The dog of self centeredness or the dog of selfless service? I know that my struggle is that as soon as my focus turns to me I begin to implode unless I feed the dog of selfless service. Do I get it right all the time? Absolutely not.

_mg_9114 cWe both shared a rare moment this past week. A moment where Theresa stepped away from her world of schedules and lists and made a spur of the moment decision. I was working a food event at church for 400 women who were attending a retreat weekend. Megan was asked to dance a ballet number during the worship time of the evening. Theresa made the decision to load up the three little ones at home (Hannah was at a 4-H event) along with the needed equipment for Isaac, complete with a nurse, and make it in time to see, video and take photos of Megan. She did it all with about 5 minutes to spare. Matthew was content in the car, Sarah Anne fell asleep and Isaac had a nurse with him as they waited it out in the car.

There we stood, arm and arm nearing the end of Megan dancing before the Lord, my face had a smile from ear to ear and Theresa had tears running down hers. At that moment, a brief moment in our crazy lives we rested in our Father’s arms…and all the dogs were silent.

Not all days are like the struggle I have described above…it all depends on which dog we are feeding at the time. Do you have the same struggle of what dog to feed? My prayer this week is that God would give me the strength and desire to choose wisely.

This is the last full week to vote for Lessons from Matthew & Isaac for the About.com Reader’s Choice Award for Best Special Needs Parenting Blog. You may vote once per day until March 19. You may vote by clicking here. Thanks for sharing this blog with your friends and for voting…all is appreciated to promote CHARGE Syndrome awareness and to share how good God is, even in times of struggle.