This post will probably have a lot of 'I' statements in it this time. If you think that might sound selfish and you won't like it you should stop reading and go back to scanning facebook posts about funny cats. It's OK. It's what I do when something makes me uncomfortable. Like posts about my friends' son's birthday who would have been 14 today if not for a terrible accident when he was still very young. I only read the first three words and I burst into tears. Losing a child is the worst and heaviest burden of them all. I am sure of it.
Even now as I type these words, my hands shake from the effort of trying to contain the powerful emotions that threaten to stop this day in it's tracks. My son is sick. It's unlikely he'll die in an accident. He'll just wake up everyday a little closer to death. Some days he finds he has taken just a few sidesteps - it doesn't feel closer. Other days we can clearly see that he took 3 giant steps forward. There's nothing for it. It's coming. Like a fin in the water pointed straight for you and no land in sight.
I cry more now. Some days are unbearable. Other days I manage to function like life is "normal". But you have to know most decisions I make are run through the filter of, "Will this interfere with Micah having as much chance at a normal life as I can give him?" I hate it. I HATE IT. It robs everyone I know and care about. Bethany has to grow up faster. That's not all bad - but it means less time to attend volleyball games or basketball tournaments. She is often the other Mom around here. It means I can't help build sets for Rebekah's plays or chaperone field trips. It means I can barely pay attention when Herb is trying to tell me about his day. He needs me - and I'm mentally unavailable. Herb's Mom, Lenora, lives with us and she's disappearing from this reality as Alzheimer takes over - I'm running out of time to give her good experiences before the hallucinations are all she has. Corban is only 3. He doesn't really understand how much he's not getting but I know. It's like Paul, my first husband all over again. All the good things were poisoned by his death which was the same shark that stalks my son Micah now. And because of the needs of my littlest son and his Grandmother I can't be with Micah at the hospital as much as I should be supporting him and learning about his care and treatment. He's isolated, unable to visit other patients with mostly only nurses, and RT Specialists as friends. Adults are nice - and can be so kind. Micah's youth pastor has taken the extra effort to be there for him so much more than I think he has time for. The music pastor has tried to reach spend time with him but Micah isn't always well enough. But he needs friends. People his own age. Peers. The friends were the first to fall away. It's always like that with long term illness. But the loneliness is so hard to watch. I can't fix it. I'm a mom. Mom's are great. But a person wants to be loved and missed and pursued by their peers. It's what we all want. I can't make that happen for him. How does a mom go scrounge up friends for her son? If you know - please tell me.
Before you jump to conclusions - I know how this sounds. I can't and shouldn't say any of these things. In fact I rarely do - even to those closest to me. I only do it now because of how much care people have expressed. The questions I get asked that I politely answer in as balanced way as I can so I don't lose all my friends who can't deal. But if Micah hears or sees these things he might get the idea that I resent him or blame him on some level. Which of course is just ridiculous and not true. But our hearts are so soft and we often perceive our fears as true if there is any evidence, real or imagined, to back it up. But I think people need to know, need to understand the million tiny ways something like this effect every single area of the lives of those attached to it. Don't you think I want to volunteer to make that casserole or attend that meeting or help in the nursery or be on the worship team? I feel judged but really - I judge myself. How do I reconcile all these things I think I could and should be doing when the only ministry I am have time for is my own family. I could help. But I can't. Be all you can be? Whatever. I'm trying to shut my ears to the requests that are everywhere. It's very, very hard. If you have a "normal" family that gets up, goes to school or work, comes home and spends their evenings and weekends however they decide cherish it. Hug it close and thank God.
In the end all I want is for Micah to have as many chances to squeeze into his shortened life so many of the things we take for granted because we have DECADES for things to happen to us by chance. But life is very demanding and dinner still needs to be made and I really can't put the rest of the family's lives on permanent hold because of this, can I? Should I?
I wish there was a miraculous cure but there isn't
one. So there it is - for those of you who are still reading. The truth is there is no cure. They barely understand the disease he has. And a lung transplant is all but ruled out. If he doesn't die suddenly from some kind of massive pneumonia they can't fix then this thing will go just like his Father. Slow - long - the disease will take him to the point where he is bed ridden and on a ventilator and tube fed exclusively because it's too dangerous for him to eat. Until his heart fails. This is our future. How can I care about anything else? Teachers? Policemen? Politicians? Bosses? Friends? Debts? How can I care about anything else? There IS nothing else.
I try to redeem anything negative I say or write with something up. But sometimes there just isn't one. I don't need any comments. Don't feel obligated to cheer me up. But if you are in a position to do something for someone who is in shark infested water - do it. DO. IT.
do
verb (used with object)
3.
to accomplish; finish; complete: He has already done his homework.
4.
to put forth; exert: Do your best.
5.
to be the cause of (good, harm, credit, etc.); bring about; effect.
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