You know, God is just funny. Really.
I have been mentally putting together a post about getting a new diagnosis in the last few days for the medical part of the blog because it's something we've done so many, many times and have been blessed to help others with. We've done it at Ronald McDonald House while we're there or when I was a moderator on an international medical board, or when folks were referred to me by a physician. It is a role I am comfortable with and have down to a T.
However, I get to walk the walk again myself before I can be a smarty pants and write all about it. This morning brought another progressive, difficult, daunting diagnosis with no cure. Mitochondrial Myopathy. Two of our children have Mitochondrial Disease, affectionately (or not) known as Mito. www.umdf.org www.mitoaction.org . I had been told numerous times " You know this is inherited right? And they got it from someone....." So I knew but I didn't know. I am not normally a denial person. I usually go at something difficult like a bull for the red cape but I have ignored this one for awhile. Like some of the previous diagnosis' I thought ,"Yeah, right. You all just keep pinning diagnosis on us but they can't all be real".
It is so ridiculous really. How many diseases can one person have anyway? Apparently a LOT. I am by no means the Guiness Book holder, that goes to a friend of ours Joanna. Now that gal has a lot of diagnosis, so I cannot feel too sorry for myself knowing her. Here are a couple links to Joanna's Story. It is so compelling because she has the worst of the worst yet she is the best of the best in so many respects. http://www.youtube.com/watch?v=3PfBAn11JGY
Anyway, a new diagnosis carries a set pattern, that for me anyway, never changes.
1. Shock
2. study, study, study
3. Denial/Disbelief (then for me study,study,study)
4. Anger (then for me study,study,study)
5. Sadness (then for me study,study,study)
6. Acceptance (then for me study,study,study)
Sometimes it goes very fast and I am at Sadness rapidly, then Acceptance. Sometimes it's an illness already in the family so Shock doesn't show up at all. Sometimes the shock is just such a ...well.....shock. That one takes awhile. If Shock happens to loiter around, then panic steps in as another step before Study,study,study. I don't usually have to do anger long but Ed does. That's a big one for men. Their list has a different emphasis on certain steps than a woman many times. My husband doesn't do the study,study,study because that's my duty. We have truly done this so many times we each have our jobs. We have a dance, a pre-game plan (before surgeries), a pow-wow, an executive meeting.... you get the gist. We divide and conquer. It's His and Hers then we come together to get things done.
What is odd is I can see this coming yet cannot control it. I know how I will react, I know what it entails, I know I will be fine in the end. Yet for some reason God has wired humans in such a way that this process must happen. It's like I tell Ed about the younger kids......"Why can't they just skip this phase since we know they will eventually grow out of it? It's a waste of time really." They NEVER skip a phase...ever. Same with medical. It's as if you're standing outside yourself watching the drama unfold and are powerless to change it even though you know how it will turn out.
Powerless to change it. There's a statement. And it's true. But we do have the power to do it with grace, kindness, understanding, a little class! Even the hardest parts of it do not have to be taken out on others. Our behavior for the good or bad will not change the outcome of an illness but it will change how we cope for sure. I know for us it's one of those tests from God.
Do you trust me? He says.
Do you believe I will make it right in the end?
Do you accept the lessons, sufferings, blessings I have to offer?
Do you believe I have the power to handle it all?
Like a bored child I answer...Yeeeeees Lord. It isn't Him that I am frustrated with but myself. I wonder how I can possibly do another disease? How can I cause my family to have to do more for me? How can I watch yet another child suffer? How will we pay for it all? What about the other kids....will they be neglected? The how's and whys are endless really. But they all go back to God. I either trust Him or I don't. There's either a Divine plan or there isn't. I'm not sure how you do this without faith. I have yet to deal with anyone who is trying to live in this medical circus who is not a person of faith. I believe it would be so painful and all look so hopeless without it.
Illness has so many meanings for us. I could write a book on them there are so many. Ultimately it is like a wise psychologist~priest I know says...."It all has to do with the fear of death. Period. If folks could learn to face and deal with that, anything difficult becomes that much lighter." Just as the need for love drives so much in us as humans, so also does the fear of death. We know this is true because we have had to deal with it multiple times. We have mentally planned funerals for 3 of our children at different times. Times we didn't think we would see them again alive. Once we could accept that yes, we or our children could die, will die someday....or tomorrow, things became lighter. Not easier but lighter. That fear of death does not drive us during even the most scary surgeries or illnesses anymore. It is like a stalker has been driven away. It's faith that heaven is far better than anything here. A realization this life is a preparation for the next, not one of which to be possessive. I must detach to really know God and have peace.
Is any of this easy? Nope. It isn't easy at all. It is isolating, painful, scary, exhausting, disillusioning, etc., but if it's what God has called us to there is a successful way to do it or He wouldn't ask.
Everyone...will...face...a...serious...illness...someday in themselves or their loved ones. You're not going to wiggle out of it. Don't run because it won't work.
Prepare. Prepare with faith. We prepare for the biggest things in life and disasters are a part of life. It's your time to shine; to put to use your talents and gifts God has given you despite whatever difficulty. Step out of the situation and look down on it as God does....see things in the light of eternity. Life is not easy but it has lovely times. The problem is our culture says life should be awesome all the time. What a bunch of malarkey (how on earth do you spell that??).
Know that even in the worst times attitude and kindness, faith, thinking of others while in your most difficult challenges (and yes you can do this), suffering well my friends is the only way to come out of it happy. Like it or not life keeps moving regardless of our challenges. Perspective allows us to keep moving too.
~Blessings~
Lisa
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