When you first hear the words "You have ..." there is shock, disbelief, denial. You go through the motions of day to day, and- if you like me- get online and start digging up everything there is to know about "it". That thing you have. Knowledge is power. And power over "it" is all you want.You tell family, maybe a few close friends when you are ready, then denial sets in again. You can't deny that you have "it", just that it's affecting you in any way. Day to day life must go on and the world will continue to revolve.
When there are kids involved, the walls have to go up even higher to protect them. In good faith, everyone wants to hold them, hug them and tell them everything is going to be all right. I've said the words myself to others. But then they hear you talk at night, behind closed doors, about the things that you don't talk about in front of them. The .. what ifs. The .. how will yous. The .. just in cases. The ... things I want them to remember about me ... But, they trust you and what you tell them .. so words like "all right" don't get used. You are honest, but only as much as they can bear.
They watch you. How they react is based on how you react. Whether they are 2 or 12, it's the same. If you are worried, they are worried. If you are acting ok, they act ok. Which to some degree, I think, is ok and understandable. Where is becomes problematic is when everyone stops talking, and the elephant in the living room gets bigger, and bigger.
You notice small things first ... no blow ups, no tears, no "will you die?". They stop sleeping so well, eating patterns change, they spend more time with you. Their grades may shift abit. They don't want to go out, then they don't want to stay home. They become "too" helpful. At school teachers worry. Every little thing becomes "I think they are struggling with your condition". But, it's their way of coping and face it, they're teenagers -.
You want them to never leave your side. You want to treasure every look, every fight, every word that is spoken. Pictures become more important. Memories more distinct.
Sometimes, all you want to do is just talk to someone about what is going on- just to say it, hear it, know it outloud ... most times, you don't. I'm not a drama queen, by nature, nor do I find pleasure in gossip. I'm a hit-it-straight-on kind of gal. Friends are to be treasured and not used for my own gain. Words like "dialysis, transplant, no available related donors, possible rejection, death" can be pretty unnerving. Absolutely. The thought of not seeing my kids graduate, marry, and start families keeps me awake at night. Absolutely.
In a quest to provide support, some can become too overly concerned that you are living some semblance of a normal life. They tell you that you are not dealing with things, simply because you don't live in the bad-to-bad moment-by-moment reporting mode. They can struggle when you choose to celebrate the fact that you are here and living in the moment. Honestly, do any of us have any assurances of tomorrow here on earth? A life-threatening condition is simply that- threatening. Threats can be overcome and conquered.
The things you appreciate most are the little things. "I'm praying for you", "Here's a hug", "you look really good", "How can I help" ...
I cannot fathom looking someone in the eye and asking them to donate a part of their body to me. It seems selfish. The what's ifs drive me crazy- what is someone in their family needs it later. What is they get sick, have an accident, whatever, and need that kidney. What if - what if? How can I bear that kind of responsibility? And then I'm racked with the guilt of - what about my kids? Don't the deserve a mother?
In 2 Corinthians 12:8-9 Paul says "... I pleaded with the Lord to take it from me, but he said to me 'My grace is sufficient for you, for My power is made perfect in weakness'..."
Are we less faithful when we plead to God to just make it better, heal me now, take this from me, why me? I truly don't think so. God created me in His image, and the Bible tells us how He gets angry, how His heart breaks, and how He loves ... just to name a few things. Which I believe means that He understands when I worry, and when I stray from believing this will ever go away - because He knows that in my anger, self-pity and need to be 'normal' sometimes, I find that I only find peace when I get back to basics and turn it all over to Him again. And He is there, arms open on bended knee. He holds me, strokes my head, and tells me He loves me.
And that, no matter what, He is there and in control. Somewhere out there is the kidney I need, if that is the path God chooses. It's pre-ordained and done in His book. Now, it's the timing. Not my time, God's time. And as my husband says "Patience is a virtue, and I am not a virtuous woman". So, I bide my time praying for the donor, the family and the teams that will be involved in this process. That God will make something good out of this for all of them- those whose names I know, and those I don't know yet.
In closing, I want to say Thank You to all of you who have found your way to my little blog and offer up your prayers and simple words of support. I am dumb-founded at the way God has provided each of you at the just the right moment, with just the right thing I needed to hear. It's precious, and just another daily reminder that he is our Jehovah Jirah, Provider, Abba Father.
I'm truly humbled.
Update:
Several of you who have visited the site know someone who needs a tranplant of one kind or another- and have emailed to ask what criteria is for considering live organ donation. This is what we have been told are the basics for kidney donation:
- Minimum 18 years years old, maximum is preferred between 50-60
- BMI of 30 (body mass index)
- No history of high blood pressure, cancer, diabetes, kidney stones or urinary track infections
- Overall perfectly healthy - they have to have a legitimate reason to take a perfectly healthy organ out of a perfectly healthy person
- Anyone who does donate, and at a later time requires a transplant themselves goes to the top of the list, per the requirements of UNOS. There is more information on all forms of organ and bone marrow donation on their site.
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